Monday, April 9, 2012

My Bucket List

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.  And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing.  If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.


OK everyone, I have a lot of living to do in just a little bit of time and I'm going to need all of the help I can get from my parents and anyone else who wants to help.  Keep in mind in everything I do, the two most important things are that I'm spending time with my mommy & daddy, while at the same time spreading awareness for SMA.  So with that said, please help me come up with ideas and if possible, help me complete the items on the list and/or share in the experiences with me. Nothing is too crazy and trust me when I say this, if you can dream of it for me, my mommy and daddy will find a way to make it happen.  All ideas are welcome and if you can help with any of these please let me know.  In no particular order, this is my bucket list:


THE NEW #1 THING FOR MY BUCKET LIST:
I want to be a big sister someday.


I CAN HANDLE THESE MYSELF, BUT WOULD LOVE IF YOU JOIN ME IN COMPLETING THEM:
Wrap my arms around my mommy & daddy
Give my mommy & daddy a big kiss
Swim w/dolphins
Go tubing down a river
Paint a picture for my mommy & daddy
Reach my 5-month birthday

Go on a road trip
Throw a party and invite all my friends & family
Swing on my swingset
Play dress up and wear all the clothes in my closet and have a photo shoot
Play dress up in my mommy's closet and have a photo shoot
Go swimming
Be a cheerleader

Go to San Diego and visit the Zoo
Attend a birthday party
Attend a sleepover
Stay up past my bedtime watching TV with my mommy & daddy
Sleep in my mommy & daddy's bed because I was afraid of the boogeyman in my closet
Sit up
Go hiking
Go camping & make smores
Make cupcakes
Bake with my Tia Kristy

Sit on my daddy's shoulders
Lounge by the pool reading trash magazines
Get a mani/pedi
Go to a waterpark
Read a book
Have a drink with mommy & daddy
Get a massage

Ride a bicycle
Go roller skating
Be potty trained
Play hide & seek
Have a birthday party
Have as many birthday parties as people want to have with me
Celebrate my real 1st birthday

Go to the movies in my pajamas
Watch the Polar Express
Go kayaking
Make a lemonade stand
Get my drivers license
Drive a car
Go hunting
Go bowling
Make college visits with my mommy & daddy
Learn to type
Go to the beach
Visit my Nana & G-Pa in New Braunfels
Go to a concert
Learn to play an instrument
Sing karaoke
Dance
Go to an Aquarium
Visit where my mommy & daddy first met
Fly a kite
Play poker
Get a present in the mail
Go to work with my mommy
Go to work with my daddy
Go on a boat
Lose my first tooth and get a present from the tooth fairy
Meet Santa Claus
Dress up for Halloween and go trick or treating
Get a tattoo
Have a father daughter dance while watching Father of The Bride
Have a tea party
Have an even BIGGER tea party

Blow bubbles with my mommy and daddy.
Ride in a convertible and feel the wind in my hair
Ride in a Jeep

Race Go Karts
Eat ice cream
Go take pictures in the bluebonnets
Give butterfly and eskimo kisses

THINGS MY DADDY WANTS TO DO WITH ME, WHEN I COULD BE PLAYING WITH MY BARBIES, HAVING A TEA PARTY, PAINTING MY NAILS, OR JUST ABOUT ANYTHING ELSE:
Play a round of golf
Go to a Houston Astros game
Go to a Houston Texans game
Go to Chicago and watch a Cubs game at Wrigley Field
Go to Boston and watch a Red Sox game at Fenway Pawk
Go to Green Bay and watch the Packers play at Lambeau 


THINGS MY MOMMY WANTS TO DO WITH ME, WHEN DADDY'S NOT LOOKING:
Go shopping with the girls then come home and tell daddy we spent about 1/2 of what we really spent and then hide what we bought under the staircase.
Get my ears pierced - though mommy really wanted me to wait until much much later

I NEED SOME BIG HELP FROM OTHERS WITH THESE:
Capture at least 1,000 hugs & smiles before I die - don't be shy, hug me and say cheeeeeese :-)
Be the flower girl in a wedding
Meet someone else with SMA
Ride a horse
Go skiing
Go skydiving
Attend my first day of school
Graduate elementary school
Graduate middle school
Graduate high school and walk across the stage and receive my honorary diploma
Graduate college and walk across the stage and receive my honorary diploma
Run a 5k
Walk in an awareness event
Play in a softball game
Score a goal in a soccer game
Throw out the first pitch at a baseball game
Be an Honorary captain at a sporting event
Have a first crush
My first kiss
Go on my first date
Get married
Go bungee jumping
Ride a mechanical bull
Race in a sports car
Ride a motorcycle
Be asked to prom
Go rock climbing
Ride a Ferris Wheel
Ride a Roller Coaster
Run with the Bulls

I NEED A LOT OF HELP FROM EVERYONE WITH THESE:
Go viral on the internet - I know I'm not singing a song, doing anything funny, saying something politically  incorrect, or anything like that, but it would be nice if my story went viral so that SMA has a face.
Be an inspiration to others and then continue to be an inspiration to others
Teach the world about SMA
Help find a cure for SMA so kids like me can use their muscles to walk, talk, hug their loved ones, and live a long lasting healthy life
Go over 100,000 page views
Go over 1,000,000 page views
Go over 10,000,000 page views

Raise $1,000,000 towards a cure for SMA and then do it again and again and again and again
Meet someone famous who will help give me a voice in my fight against SMA so people take an interest
Visit the White House
Be on TV
Be on the radio
Be in the newspaper
Be on the Ellen Show - maybe she can help spread the word.
Meet Oprah - maybe she can help spread the word.

Be on American Idol - maybe they can help spread the word
Have a song recorded that was written about me
Speak in front of Congress


PLACES I'D LIKE TO GO TO/VISIT/SEE:
Go to the Grand Canyon
Go to Niagara Falls
Go to NY City
Go to Hollywood
Go to Disney World
Go to 6th street in Austin

IDEAS I LOVE THAT WERE SENT IN BY OTHERS:

Create a Twitter Account (AveryBucketList)
Create a Facebook Fan Page (Averys Bucket List)
Wear a sombrero while having happy birthday sang to me at a Mexican restaurant
Watch the Academy Awards

Watch The MTV Challenges with my family
DVR my favorite show
Be a part of my daddy's Fantasy Football team
Write on the walls
Break somethingWear Mardi Gras beads
Watch the movie Annie and learn to sing ALL of the songs with my cousin Gabby
Make a mess of the books in my room
Be in a school play
Learn to write my name
Play in the bath with my cousin Gabby and get in trouble with her
Play sports with my cousins - girls against boys
Run through a haunted house

Mow the lawn
Buy my first home
See where my mommy, daddy, and my aunts & uncle grew up. 
Watch an rated "R" movie, with my aunt and cousins and not tell my parents
Play barbies with my cousin Gabby

Cheer for my cousins sports teams
Invent something
Take out the trash with my daddy

Hide from my mommy & daddy when they come home from work
Get an allowance

Go shopping with my daddy's credit card
Make straight A's on my report card
Throw a tantrum in the middle of a department store
Make a mess eating at a restaurant and embarrass my parents
Gossip with my friends

Play a joke on somebody
Attend a graduation
Meet all my family & our friends
Play in the mud
Make a mold of my hands & feet for my mommy & daddy
Play in the snow
Celebrate all of the holidays (even if it's not time to celebrate them)
Go to the zoo & feed the animals
Cuddle with mommy & daddy
Try on mommy's wedding dress

Wear a big bow
Date night with mommy
Date night with daddy
Perform in a ballet recital

Blow bubbles
Talk to mommy & daddy

Join a sorority
Dress like a troll doll

Get a little brother or sister

THE LAST THING I WANT TO DO:
Overcome my illness
But if not, then I'd like to take one last breath, then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents (Tommy, Laura, Jim, Walter, Julia, Joseph, and Audine).


Help me add to this list with anything you can think I should do in my lifetime.  Anything from birth to adulthood and remember all ideas are welcome and if possible my mommy & daddy will find a way to make it happen.



Don't forget to share my story by following & forwarding my blog, following me on Twitter  (AveryBucketList) and Like Me on Facebook (Averys Bucket List)!  While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!



If there's anything you'd like to mail me, you can send it to:

Avery's Bucket List
PO BOX #2849
Bellaire, TX 77402


Also, my mommy & daddy wanted me to make sure you know that all monetary contributions will be used towards continued SMA awareness and the further advancement of research to find a cure for SMA.  If you feel more comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:

Fight SMA (www.fightsma.org)


If you donate directly to Fight SMA please let me know so I can keep track of reaching my bucket list goal of raising at least $1,000,000 towards a cure for SMA.

434 comments:

  1. Make a sandcastle at the beach with my Mommie and Daddy and play in the mud puddles and blow bubbles..

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  2. The boys would love to take her for a tube ride on the boat and they might even let her drive the boat! :-) Don't forget to add dancing in the rain with mommy and splashing in the puddles. -Marina

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  3. Hi Avery,
    I came from a link posted in FB all the way from Malaysia and very glad I did. You have so much love tp give. You have such a gorgeous smile and bless with a lovely family. Some ideas for your bucket list: feel the rain & the snow (we dont have snow here but my 3-yr old son loves playing with ice, you can try that too). Ride on elephant and go snorkelling alongside turtles. Yet honestly, I have to say my favorite moment with our son is to dance in the middle of the night like there's no bedtime, try that too! xoxo

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  4. Make snow-angels and climb a mountain with her mommy and daddy.

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  5. Sweet Avery, I don't know you or your family, but what an amazing story you have to share. Ask your parents to take a picture of all 3 of your hands ~ your hand on top of mommy's hand that's on top of daddy's hand. You can also do this with you, mommy, and your grandma - you get the picture. Then, ask Mommy & Daddy to place their wedding rings on each of your 'big' toes ~ take a picture of the bottom of your sweet feet. God Bless you and your Family, Lesli

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  6. Hey Sweet baby! I would like to see a SMA foundation with your name on it listed with the Chevron Houston Marathon's Run for A Reason Charity Program so I can enlist my fellow runners to educate others and to help raise money for this cause. You know us runners are a powerful group. We love to run, but we love even more to have a very good reason to run. I can't think of a better one than you!!!

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  7. Avery,
    We know Houston is a wonderful place to live (and of course you have the most fun and amazing parents, which makes things pretty awesome there), but we think you need to travel north and add some snow activities to your list! We highly recommend that you add to your bucket list:
    - Build a snowman (and a snow fort)
    - Go sledding (fast)
    - Go skiing (faster)
    - Do some ice fishing
    - Go ice skating
    - Eat icicles off the trees
    - Catch snowflakes on your tongue
    These are some of our favorite winter activities. Come stay with us and we'll show you some winter fun! It's the best time of year! We love you and pray for you every day, sweet Avery. Xoxo from Minne-SNOW-ta!
    Love, Ashleigh, Aaron & Avery Cannon

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  8. How about be in a parade and run through a water hose

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  9. I would love to help with an awareness event, in any way I can. In my opinion starting with a 5k would be ideal. You your family and friends can run in it to add to your bucket list! I live in San Antonio and could be very hands on with local running groups here, or do what I can to help if held in Houston. I would also be most honored to run in an event, in either city, in your name and honor :) Smiles and prayers!

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    1. I would love to be a part of this too. I work for lululemon athletica in Houston and we have a large Run following. I would love to help arrange this and spread the word. It could be huge!

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    2. Hi Christie & Shannon,
      My name is Lacey and I am very good friends w/ Laura and Mike. I'm helping them out w/ the outpour of help and offers they've received from everyone, including you two. I am also a runner and want to put together a run for SMA and Avery, but will need help. Would you guys mind sending me an email w/ your contact info? I will need all the help and guidance I can get with this, so thank you very much!
      lacey.repper@gmail.com
      Lacey

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  10. Hi Avery!

    I do not know you or your parents but found your blog thru Facebook. You are such a beautiful little girl and I want you to know that I am praying for you and your parents. You need to let a puppy lick your face Avery! I know, it sounds gross. But puppies have a way of bringing an infectious joy to the people around them. Also, have someone pick a flower for you and put it in your hair and take a picture of you. Listen to your mommy and Daddy read you a Dr.Seuss book. And my friend sitting next to me says every child should eat a peanut butter and jelly sandwich. Enjoy the journey of crossing these things off of your list!

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  11. Lay in the grass and look at the stars. Feel the wind on your hand as you you are driving (or Mommy and Daddy can drive) and watch little bugs in the grass. My thoughts are with you all. She is beautiful :)

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  12. What a blessing to wake up and read your inspirational story. While my heart breaks for all touched by the pain of your SMA; it also swells with joy that God chose to give you to such a wonderful mommy and daddy. My guess is that he knew they would make your all too short life special. You are a gift to them and the many whose lives you will touch bc they have chosen to share their gift (you :) with all of us. Wow. Thats pretty amazing that they have the strength to do that, but there is nothing stronger than love and it will lift you all higher during the good times and it will hold your mommy, daddy, & you up when things are rough. It has tremendous power; as you can already see from the many people who are sharing your story and sending you things to add to your bucket list. I can't wait to see what life holds for you!
    A few things I would suggest:
    Watch a HS football game under the Friday Night Lights - Homecoming is the best! You would love all the beautiful, sparkly mums, bells, and ribbons. Make sure mommy and daddy get you your own HC mum - you're a girl born in Texas, it's a must :)
    Go to the Zoo - Any Zoo, they're all wonderful. However, my favorite is the Henry Doorly Zoo in Omaha, Neb. If you go in July, you could also go to a College World Series baseball game - another great add for your bucket list!
    Put your toes in the water and your... (earmuffs) a$$ in the sand :)
    Watch the Saltgrass trail riders come in to town for rodeo. I suggest a viewing place in Katy - Morton Ranch road after they leave Katy Park is pretty amazing to see them all on their horses and wagons - My boys loved it when they were little.
    Have a picnic with a friend at Mary Jo Peckham Park (also in Katy). There's ducks to feed, miniature golf, a fishing "lake", walking trails, playground, and more...
    Watch a sunset and sunrise over the ocean or a lake.
    Visit the mountains in Colorado.
    And yes, go have your picture taken in the bluebonnets. They're beautiful!
    Take pictures of all your adventures and your everyday experiences...An most of all, Have Fun!

    Be Tough, Avery!!

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  13. Avery, come visit me and we'll cross NYC off your list :)
    xoxo stefanie

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  14. Hi Avery,

    I just found your blog through a friend's post on Facebook. I wonder if we can add and cross finishing an Ironman triathlon off your list?
    Let me know what you think. Ironman Texas is May 19. We might be able to work with the race director and get you across the finish line.

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  15. Im so sorry about the recent diagnosis. Our son Nathan passed away almost two years go from SMA. He was 6 1/2 years old. Although SMA is a horrible disease these children truly are angels on earth and we as patents are very blessed to be touched by their spirit! Your positive attitude and outlook is remarkable! What a beautiful little girl you are Avery!!!! Feel free to check out nathans blog . Hugs!

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  16. If you need anything or I can help in any way, my name is Jennifer Russell. Your story was shared with me from a neighbor who has a friend who knows you. You can send me a friend request on Facebook and I can introduce you to many families and support groups. One of which is SMA moms. You might already know about all this! :)

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  17. * go to a Daddy/Daughter dance

    * write your name in wet cement

    * ride in a hot air balloon

    * go camping

    * spend a whole Saturday morning watching cartoons

    * play in a pile of leaves

    * walk a dog

    * watch the Northern lights

    * go to a rock concert

    * walk barefoot in the grass

    * ride a roller coaster

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  18. Hi Avery,
    My name is MJ and I found your blog through Miss Jennifer (she wrote you above)...through the internet, so you're one step closer to going viral. I have SMA type 1 also and am 24 years old. I've done lots of your bucket list items but you have definitely inspired me to make my own bucket list.
    I wanted to tell you that I think, with help from your family, you can do everything on your list. I would love to get to know your family better. You can e-mail me at b4sma_kids@yahoo.com or you can find me on Facebook at https://www.facebook.com/mj.queen
    I have an organization that sends blankets to kids with SMA and would love to send one to you. My organization is called B4SMA. My caregiver and several others make the blankets. If you would like more information, check out http://www.our-sma-angels.com/b4sma/
    Should you decide that you would like to receive a blanket, please e-mail me with your post address, your favorite color, full name and age. All we ask in return is a picture of you with your blanket covering you. Also, if I can help answer any questions your mommy and daddy may have regarding SMA, please tell them not to hesitate to email me at any time. I am not afraid to answer any questions you might have. Big hugs to you and your family.
    MJ
    b4sma_kids@yahoo.com

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    1. What an inspiration you may be to this family! Best wishes to you all!

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    2. Avery, What an inspiration you and your family are! You are so beautiful and truly an angel from God. I am helping any way I can by posting to my facebook page, asking Ellen to have you on her show, and emailing friends this link so everyone can be aware of your bucket list and SMA. Is there any place we can send donations or things on the bucket list for you to have? If so please let me know!! God Bless you little princess!

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  19. Hi avery,
    There are a few other things you can add to your bucket list that I would love help you with. See I met your mommy and daddy in San Marcos where we attended college. It would be so fun to show you the best apartment complex there aka Bishops Square. Your mommy worked there when I moved to San Marcos and then I got to meet your daddy. We had a lot of good times there and so many beautiful places we could show you. We could walk your through the quad of the campus, take you to where our mock baseball team "happy hands " used to play, show you what spike fest is all about and most importantly take you on a river trip. The most important thing you need to remember is that you were born to the two most amazing people I have been blessed to meet.
    Love,
    Tessi

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  20. Love everyone and be loved by everyone!

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  21. Play in the sprinklers!
    That's all I have for now but there will be lots more to come from Aunt Lacey & Uncle Ryan!!
    xoxoxo!

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  22. I know she is little, but have you contacted the make a wish foundation? I hope she proves everyone wrong and is able to do everything and then some on this list <3

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  23. I knew I would have a few more. :)


    Make a prank call
    Give & get BFF bracelets or necklaces
    Shave your legs (ok, this will turn into something that really is more of a chore than fun...but every woman has to do this once in their life!)
    Grow a mullet - and like it!
    Stay in a swanky hotel & be pampered (yea... this one might be more for mommy and daddy, but there are lots of benefits for you too... :)
    Have a man buy you flowers
    Have a man buy you diamonds

    Love you sweet angel!
    Aunt Lacey

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  24. Dear Avery....We don't know each other but my name is Nicole Givens and I read your story through a friend. I can't stop thinking about you and your family. When I saw your blog yesterday I have been thinking hard on what to suggest for your bucket list. I think you should experince having a best friend. My family and I live in CT and I have a daughter who is the same age as you. Her name is Brooklyn and she just turned 5 months yesterday. I would love for her to be your BFF and penpal. I could send stories and pictures to you and read to Brooklyn about you through this blog. Your parents are welcome to look me up on facebook and I would love to exchange photos and letters. You are in mine and Brooklyn's prayers.......

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  25. Hello again,

    I have been thinking about you all day, since I first read your post at 6:50 this morning and trying to come up with some things to add to your list. I just put my 3.5 year old to bed, when I realized what I was supposed to tell you. I wish for you to speak the three words that every mom and dad want to hear over and over again. Those three words are "I LOVE YOU!" I also wish for you to create traditions with your parents. Every night my husband and I switch off reading books and brushing teeth with my oldest. When we pick books, my son picks one and then I pick one and we cuddle in his bed to read them. Traditions will be remembered always, so I wish for your to create traditions with your family! Many thoughts and prayers will be said for you tonite precious little girl! -Tina (Marcy's cousin:))

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  26. Miss Avery,

    Here are some items to add to your list: get your drivers license picture taken so you can always talk about how bad it is, get your passport, go to an 80s theme party (all girls love the 80s) and see a play in NYC when you go! I have spread the word about your story in my office and everyone is thinking of you and praying for you. You're such an inspiration to us all!

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  27. Reading your story, Miss Avery, has inspired me and has reestablished my lust for life. You and your family are stronger then anyone could ever imagine having to be. Faced with such a tragic situation, yet so happy just to have what little time you do with your loved ones. Your smile has put a smile on my face and I can honestly say that your impact in this world will continue to inspire me and others. The happiness that you and your family & friends are sharing in your short amount of time with us is beyond the happiness most people could say that they experienced in their long term life. I'm graduating from Florida State University on April 28, 2012 and would be proud to take Avery across that stage and see her beautiful smile inspire everyone. I will be thinking about things to add to your bucket list, Avery, but if you make it to Florida I would love to help 'Live it Up' with ya'll!

    <3, Jamie

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  28. Go snorkeling in the Bahamas! I can't even begin to imagine what you guys are going through, but know that because your family cares enough to let people know your story, your sweet little face will be known, probably world wide. Everyone will know that Avery is here now and somehow some way your memory will live on forever. Have fun on your journey and experience as much of life as you can! I truly wish you all the best.

    ♥ Whitney
    Cleveland, TN

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  29. I have a 8 month old son who would love to have a play date.. You can throw dirt in each others hair... Finger paint, eat baby cookies and not have a nap all day! Your in my prayers sweet baby. God is holding you in his hands and you will be able to all the things above and much more. Your aunt mentioned some things for a guy to do for and my little man is the perfect one for the job. :) Blessing to you and your family.

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  30. Wow I was overwhelmed with emotions when I read these, you are truly amazing people! I coach a little girl 8 and under softball team and we would be honored to have Avery as our honorary captain one game and throw the first pitch!!!!

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  31. If you'll be in Dallas this Saturday or next Saturday you're more than welcome to come by our kiddo's game and make a goal!

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  32. Hello sweet Avery,
    I will praying for you and your family everyday. Your strength is amazing, and you are truly an inspiration!
    -Go to sea world
    -decorate a Christmas tree
    -go to prom
    -play in a sprinkler
    -go down a slip -n- slide
    -slide down a slide
    -blow kisses

    Praying you can complete everything on your list and much much more!!!
    P.S. I came to your site from a link on Facebook, I will help your story go viral!

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  33. AVERY, My fiance and i are getting married in New Orleans oct of 2013. We have a daughter who is about your age named Catherine! She made 6 months on the 5th of april. She is going to be our flower girl, but i think she may need some help walking down the aisle. So if you are interested, maybe you and catherine can walk down the aisle together as my flower girls. Thank you for sharing your story! It truly is an inspiration!! You may have a horrible disease, but you also have something that ALOT of people arent as fortunate to have and that is a loving family who is devoted to making you happy. That is something to truly to be thankful for! :) take care and keep smiling, dear!!

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  34. hi sweet little miss avery!
    if you ever make your way to austin- we would love to help you with one of your BIG things!
    race in a sports car!
    my husband owns lone star exotics [www.lonestarexoticrentals.com] + we would love to chat with your mommy + daddy about scratching another thing off your list.
    we have a 2.5 month old baby girl as well- named avi, who can't wait to meet you!
    you're such an inspiration to all of us! :)

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  35. This is sweet and sad, but I'm glad all of you are fighters! I'm sorry and I'm praying.
    Here are a few things to add to your bucket list.

    ~ Stand on your Daddy's or Grandpa's feet to be able to dance.
    ~ Bake chocolate chip cookies and lick the spoon.
    ~ Make manicotti with your Mommy.
    ~ Sit on the stage at any concert (local, big, public - doesn't matter - the experience is cool no matter where it happens).
    ~ Pet a dog.
    ~ Go to a petting zoo.
    ~ Play miniature golf.
    ~ Go bowling.

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  36. Hi there Avery. My name is Brandy and I'm a photographer in DFW and I'd love to take a day and do a photoshoot with your and your family. Feel free to contact me anytime and we can make a lot of memories.

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  37. Find a four leaf clover and catch lighting bugs. You are an amazing little person Avery! Keep on making great memories!

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  38. Make Chocolate Chip cookies with Mommy and Daddy and eat half the cookie batter.

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  39. * Tell your Mommy & Daddy 'I LOVE YOU'
    * Blow an eyelash and make a wish

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  40. Hello sweet girl,

    I also live in New Braunfels like your grands! I have two little girls Hannah (7) and Emma (2). Please tell your mommy and daddy we are praying for your guys, and are overly excited to see what God has in store for your life, and to also see what you are going to do next! You have been a real inspiration to me, and i think i'm gonna make a bucket list of my own! But here are some ideas for yours that my little ones like to do....

    Bring home a stray animal( dog, frog, caterpillar (yes we have had one of each!)
    Dance in the rain on a warm spring day.
    Pour out all of your toys from the toy box that your mommy and daddy can't see the floor of your room!
    Go on a car trip to NB and continuously ask "are we there yet?"
    Have your mommy and daddy kiss you and then wipe off the kisses and just smile sweetly about it and laugh when they get mad.

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  41. Make a wish upon a STAR...God Bless you!

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  42. Sweet little Avery-
    I wish I was still in Texas or you were closer to Oregon. I'm getting married in 2 weeks and would love to have had you as my flower girl!!! God Bless you and your family!!!

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  43. Dearest Avery, I coach 2 soccer teams in Victoria and would love for you to come and play for a day. If that won't work out you could ask your Mommy and Daddy to send a picture and you could be "in the game" with my kids. Not only could you score a goal with my daughter, you could play goalie with my son! Something you could add to the bucket list and then two to cross off. Let me know if you might like to come. We would love to have you. tell Mommy or Daddy they can email me at tisha_franz@yahoo.com.

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  44. Avery, what I think you should add to your bucket list is winning a goldfish at a carnival or fair! You could even take your new pet on the ferris wheel for the ride of his life. Sway the car and watch the water in the bag swish back and forth. He'd be the lucky one as you meander through the barns because he wouldn't have to smell their stinky poo. :) stay late for the rodeo! Sneak him some cotton candy on your way home.

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  45. Go to Sesame Place outside of Philly and the Philly Zoo!

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  46. Hey there Miss Avery!! I have not met you but I know your mommy, we went to school together a long time ago. Your story has touched my heart and I want to help in any way I can. I have a few ideas for your bucket list...

    Go to the beach; stick your toes in the sand and water. Feed the seagulls!

    Take pics in bluebonnets

    Go to a Texas country music concert

    Make a "handmade" gift for your mommy on mother's day

    Make a "handmade" gift for your daddy on father's day

    Go see a movie

    Watch a fireworks show

    Thats all I have for now. Stay strong and god bless you little one!!

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  47. Hello Avery, my name is tabatha and I live in Tennessee! I wish we lived closer to each other. I am getting married on April 21, 2012. I would love to have you as my flower girl! You are such a beautiful little girl, and I know you are going to touch so many people in your life. I am going to share your story with all of my friends, and hopefully one day doctors will find a cure for sma. You and your family are in my prayers. God bless you all!

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  48. Hi Avery - I am sorry to learn of your illness but happy for you to be surrounded by such loving family and friends. Your sweet smile must bring such joy to them each and every day.

    I live in Houston too and am a friend of someone who is friends with your mom. I just wanted you to know there are a lot of us who care about you and will share your story with others so maybe one day, SMA will have a cure.

    In the meantime, I thought of a couple of things you could add to your bucket list for things to do with your grands. Grands are the best cause they let you do whatever you want !
    - spend the weekend at grandparents and you get to decide every meal that will be eaten ...even if it jelly beans and peanut butter sandwiches for breakfast (don't ask why, my little granddaughter loves to make us eat these and just giggles and giggles about it)
    - look at photo albums with pics of your mom or dad when they were little and ask the grands to tell you stories about them when they were little kids
    - go to the library, sit on the floor and have the grands read you every book you hand them
    - get up early in the morning and run into grands bedroom and jump up and down on the bed to wake them up ! Then snuggle with them :)
    - go to the movies with the grands and get popcorn, candy and a drink...trust me, they don't mind paying exhorbitant prices to give their little princess a special day
    - speaking of princesses...you need to be wearing a tiara. Get grandma to buy you one...I wear mine all the time :)
    - say your prayers every night and then give kisses and hugs to all before you lay down to sleep

    hugs and prayers to you all...AND I AM FORWARDING YOUR INFORMATION TO THE ELLEN SHOW...I definitely think you should be on it !!!! Oh, and don't forget to wear your tiara and maybe even a fluffy skirt, I hear Ellen is partial to little girls wearing those.

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  49. Beautiful little Avery, you and your family are in my prayers. We may not understand now and we may never understand why this is happening but God had such a huge plan for you, I promise! He is right there beside you always and forever. You are precious to Him and He has great things for you ahead. I'm graduating from Sam Houston State University in Texas in exactly one month and would give anything to fulfill your dream of crossing that stage and receiving an honorary diploma. I want you to know that you will be in my heart and in my thoughts that day. I'm praying for you, little one. <3

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  50. My fiance and I are getting married June 30th in Austin, Texas....we would feel blessed to have you as one of our flower girls....can I email you???

    Praying for you and your family now.

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  51. Little Avery, one of my favorite things to do when I was little was to build a fort out of the living room sofa cushions, and sheets I pulled off of my bed. My best friend and I would "camp out" there all night. My dad would bring us flashlights and make us snacks for the "long" night. I hope you get to do this too, one day. I know your spirit is far brighter than any of us could possibly imagine.

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  52. Thank you for sharing your story Avery! It is because of people like you, and your mommy and daddy, that people will continue to learn to give and love. Thank you for teaching us all to make the most of every day. Here are a few things I thought of that should be on every child's bucket list:
    - Go to summer camp
    - Build a fort out of blankets and pillows
    - Climb a tree
    - Dig for worms and make mudpies

    I look forward to reading about your adventures, and I will help join the cause to spread the word about SMA!

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  53. Can you email me at melanie@thepaintpub.com to work on scratching a few things off of that list? Thanks!

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  54. Make a snow angel... or a sand angel...

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  55. Sing off tune while Mom and Dad smile and listen closely.
    Do that first cartwheel and show the expression of "I DID IT!"
    Hide under the covers and giggle, while Mom and Dad "look for you.."
    Go on a Date with just Dad.
    Play UNO on the floor with Dad.
    When Mom is not around and Dad is driving in the neighborhood, stand up and stick your head through the sun roof...shhhh...don't tell anyone.
    Make Mom and Dad hang that priceless artwork you made at their work.
    Put cookies and milk out for Santa.

    -CHECK THIS ONE OFF- Put a smile in a strangers heart and put you in his mind.

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  56. I work for the Houston Astros and would like to have you out as my personal guest for a game. Please contact me at rtapia@astros.com. Thanks!

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    1. I bet Daddy is going to be excited about this offer!

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  57. I live about an hour and half south of Niagra falls, if there is anything I can do to help her see them let me know! vknewman0804@email.campbell.edu

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  58. I live in Williams, AZ. We are a little south of the Grand Canyon which is on your list. Just down the road from me is a Deer Farm & Petting Zoo and a little ways away is a drive thru wildlife park and petting zoo. Williams is a wonderful town to live in with my children and I think a visit would be great for you and your family! We may have a lot of tourists pass through but the residents of this town know how to take care of each other and our guests.
    Kelslynn221@gmail.com

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  59. Try out for Houston Texans cheerleaders this weekend, attend your first crawfish festival this weekend in Kemah and attend an aerial circus class at vault houston. I am trying out this weekend for the Texans and I do aerial arts classes three times a week!! If there is anything I can help with let me know!! dap9900@yahoo.com
    Thanks for sharing your story about Avery and SMA.

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  60. Dear Sweet Avery,
    I have just learned about you. My heart swells with pride that your mother and father are enjoying every possible moment with you. I'm currently trying to find a location where you can cross off several of your bucket list items. I don't want to ruin the surprise so as soon as I have all the information I need I will let your mommy and daddy know!!
    Lots of love goes out to you and your family sweet girl!
    Miranda

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  61. Dance in the rain and splash in a puddle. Whenever you are back near San Antonio my family of 5 would love to help you get closer to your 1000+ smiles :)

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  62. I don't know where in TX you are, but if you want to ride a horse and are in north Texas, try Equest Therapeutic Horsemanship. Their contact info is www.equest.org phone 972.412.1099 fax 972.412.5040
    Equest is designed for children and adults with physical, mental, and emotional disabilities, and I'm sure they'd be willing to help you out with that one.

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  63. Wow! Sweet Avery! How fortunate you are to have such loving and positive parents! My heart breaks for them because I know they love you more than you could ever imagine. I will spread your story and pray for you endlessly! I am moved by how many people want to help you with your bucket list
    A few things I thought of are: 1. Get Baptized 2. Roast marshmellows 3. Cut your own hair when no one is looking 4. Get gum in your hair and have to use peanut butter to get it out. 5. Go to the American Girl store 6. Perform in a dance recital 7. Be in a pageant like all good Southern girls do ;-) 8. Wear a smocked dress (another Southern girl tradition) 9. Adopt an animal from the pound. 10. TAKE UP EVERYONE'S OFFER TO HELP YOU COMPLETE YOUR BUCKET LIST!!!!
    If you want to make a beach trip, my family and I live in Biloxi (not the greatest beach but still a beach) and would love for your family to visit us to put your toes in the sand and take a boat ride. We have plenty of room and are about your mommy and daddy's age. We are also very close to Gulf Shores and Destin. While you are here, the daddy's can help you with your round of golf while the mommy's help you with dress up and a photo shoot because I know a great photographer!! jamimac23@gmail.com

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  64. Avery,

    Your story has touched my heart deeply. I am a 4th grade teacher in San Antonio, Tx. I would love to have you attend your first day of school at my elementary school and to come see the Alamo! My kids and I would love to meet you and your sweet family. E-mail me at stepharoni21@gmail.com.

    Stephanie =)

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    1. Avery,
      We are close to NYC and Sesame Place if you want to meet Elmo. If you can get here we can take care of the rest once here. My 2 boys (11) andj (6) could take you on your first date. We can add to your smiles and hugs and my daughter (12) is great at Manis and pedis. Livestrong. Stergi@msn.com

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  65. This comment has been removed by the author.

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  66. Dear sweet Avery,
    You and your family are such an inspiration! I have a few things to add to your bucket list... carve a pumpkin, light up the sky with sparklers on the 4th of July, bake cookies with Mommy, make homemade gingerbread houses, have a picnic, go to the movie theater and eat lots of junk food, go see Shamu, go to the Rodeo, ride a ferris wheel, own your very first pair of cowgirl boots, sleep in your own "big girl bed", go on a hayride and lastly, watch and try to catch fireflies! I wish you much luck on your journey and look forward to reading about your progress and all the fun things you are accomplishing!
    Sincerely,
    Lana

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  67. Avery,

    Your blog is very inspiring! We live up near Niagara Falls, if there is anything we can do to help you visit the falls let us know! My 9 month old son Collin would love to meet you!

    Sincerely,
    Lindsay

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  68. I have free passes to the San Diego zoo for you Avery. They're ready when you are!

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  69. Hi Avery,
    I just read your story, and it was very inspiring! I know that it would be a very long trip for you, but if you could ever make it to West Virginia, I would love to help you accomplish some of your goals!

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  70. Avery,
    I have never been inspired by someone as small and cute as you. You are such a beautiful little girl with amazing dreams and goals! I truly hope and pray you are able to achieve them. I would love the opportunity to meet you one day and get a huge hug! You've already brought the biggest smile to my face just for being you! I live in Jacksonville, fl and I know there isn't much here but we are close to Disney so when you head there, I'll keep an eye out for you. Oh and I know there is an NFL team in Texas but if you ever want to come to a jags game for some reason, I'd love to get you there! :-) looking forward to continuing to follow your blog. God bless and please contact me if I can be of any help!!! :-)
    Ashley Gramza (aharper07@gmail.com)

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  71. Avery,
    You are so precious!! Your story has been such an inspiration, and it seems as though you and your family are living life to the fullest. I am actually a Texas State University alumni (and yes it was called Southwest when I first started), but I'm currently living in Asia, and your story has reached me out here!
    I have a 2 year old daughter, and some of the things she loves to do is play with her dollhouse, have tea parties, wear her tutu and take ballet lessons, and if you ever have the chance (while you visit the San Diego zoo) you should go to La Jolla beach and feed the seagulls (even though it says not to) I think that was her favorite thing to do during our trip back home this past winter. You'll also have to buy a cowboys jersey, and paint your face with little stars. The Texas State Fair is something you don't want to miss (and all the fried foods too!)
    Please know that you and your family are in my prayers, and I believe that God has BIG BIG plans for you all! I know the biggest of God's plans are often carried out by the smallest of people =) I hope that you are trusting in HIM through all this! <3
    -Lillian

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  72. Avery!! Your story has me in tears, and I am taken back by just how much spirit you have!

    I want to help you get some things done. I am getting married in two weeks, and my wedding is on TLC's Four Weddings. If it were at all possible, you should with your mommy and daddy, attend my wedding in Phoenix, and you should be my flower girl! You'd get to meet my little boy Liam who is 8 months old and crazy about you, and be on tv! I'm totally serious, if there is anything I can do to help you, I'm seriously all in. Please let me know if you can make it, I know its far fetched. Also, you can email me and contact me for more details. <3

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  73. Dear Avery, I think another great thing for you to do would be to plant a flower with your mommy and daddy. If there is any way I can help, with anything on your bucket list, let me know. Please email me at kmbush84@gmail.com.

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  74. How do we contact you if we can help with something on your bucket list?

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  75. Play with a puppy as he licks my face. It's the greatest, unconditional love! Try it!

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  76. Sweet baby girl Avery
    you and your mommy and daddy are so inspiring!!! Your story and peoples comments brought me to tears. Going to share on my Facebook.
    I don't know if you've done these or it's been mentioned but here are some things you might want to add to your bucket list.

    take a picture with santa
    get your nails painted/manicure
    pedicure
    get first haircut/styled
    play in the rain

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  77. When you go to Disney World, have a tea party at the castle with the princesses. :-)

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  78. You can scratch "Know my entire family is loved by someone in New Hampshire" off your list.

    We love you Avery - and all those smiling people around you, too. My daughter Brittany has a rare disease called Alexander Disease - and while she is "lucky" to have the juvenile form, which means her progression is slower than children with the infantile form, it still means that this disease will take her from me - eventually.

    We are going to scratch "Love a girl named Avery" off our bucketlist <3

    www.supportteambrittany.wordpress.com

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  79. Your story has touched my heart! I have a daughter named Avery, what a special name and special girl you are!

    I have no connections to anyone famous, so I can't promise that you meet Ellen or Oprah but I did go to the Ellen show and email them your story. I hope it touches her heart the way it has mine and she brings you to the show.

    I will keep you and your family in my prayers! Stay strong little girl!


    Love from Pennsylvania,
    Becky Brumagin

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  80. Avery,
    God bless you and your family every day. Thank you for sharing your story with us. If you want, you are very welcome to come to Tennessee and graduate from our PreK and our high school to receive your diploma. Your story inspires so many people. My niece Isabella was only with us for 17 days. I am so happy that your family gets to have you as long as they can. Please know that you have a family in Tennessee if you want anything! We can also get you in a kayak and a tube down the river! Love to you and your family.
    April Shore

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  81. Miss Beautiful Avery,

    I found your blog through Facebook and I will definitely be following you and your family as you cross off all of these exciting events! I am a new mother with a 9 month old son named Nash. You have inspired us to get out and live life to the fullest. Thank you for that! I was a Pom girl at the University of Oklahoma (Go Sooners!) and I was also a Thunder Girl for Oklahoma City's NBA Thunder basketball team. If you ever make your way to OKC please let me know and we can make something happen (whether it be attending a game, the girl's rehearsal, an appearance, whatever). Best wishes to you my sweet Avery. You are a true inspiration to us all!

    XOXO!

    Lauren

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  82. Hello Avery, Mommy & Daddy
    I live in South Dakota on a small ranch so you are more than welcome to come plan in the snow and ride some of the most beautiful horses you have ever seen. In July we are expecting our firt grandson and have been told his name will be Avery!What I would add to your list that I think are beutiful to look up at are Hot Air Balloon races and the lights on Fremont Street in Vegas, no gambling yet but those sounds can really excite your senses. I am happy to meet you as I only got to meet my cousin Matthew Tyler Willims by pictures and internet because he had SMA and went home to be with the Lord 7 years ago. I can just see him fishing and playing with my son Matthew who went to heaven also way back in 1986. While we had them here for a short while they got a head start on a forever life with Jesus in heaven, and Jesus loves to hold little ones and see smiles just like yours. Hope to see you soon if you take a road trip to South Dakota. Sincerely Linda Steiger

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  83. Hi Avery. My name is Shaun Cody and I play for the Houston Texans and would love for u and your old man to come watch us play. Tell your pops to send me a message on Facebook or email me at scody.75hotmail.com. See u soon

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  84. Sweet Avery,
    What an amazing family you have! You are such a beautiful baby inside and out and I know your Mommy and Daddy feel so blessed to share your life. My class and I would be so honored to host your first day of Kindergarten. I teach at a private Christian school in San Antonio called the Buckner Fanning Christian School. I also have two sons (7 and 4) who would love to take you on your first date! I wish you infinite blessings and happy days with your family.
    Much love,
    Anne Ivy
    Anne.ivy@sbcglobal.net

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  85. Hi Avery! Sending you a virtual hug to get you to 10,000 = )
    My daughter has a g-tube (for a very different reason) and my husband is suffering from muscular distrophy....so I understand some of the doctor stuff. I understand "NFD". But I also understand the life you live in-between doctors and hospitals....and that can be amazing! Live it up girl!

    The only thing I think I would add to your bucket list is to get to know God and follow Him here on Earth before you go to His house to stay. Haven your family wrap you in prayers and I believe it will benefit you. We don't all get healing. We don't all get peace and ease....but we can ALL have love, enough love to get us through.

    God bless you little Avery! I hope you ROCK this life!! I will share your page on my fb and my blog. Much love to you!

    Stephanie Sloan

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  86. Dear Avery,

    Thank you for sharing your story! I am sending a lot of positive energy and strength to you and your family!! I have been following your posts, and I am glad to see that you are marking so many things off your bucket list already!! I wanted to help you by suggesting a some things:

    *Visit the water wall in the Galleria area with your mom & dad - the mist from the waterfall might make you giggle :)
    *Go outdoor tent camping and make smores! (Backyard counts!)
    *Go visit a local farm with your parents and pick berries (Atkinson Farm is a good one)
    *go to an Astros game and eat a hot dog and ice cream
    *dress up for Halloween
    *learn a song
    *jump on a trampoline
    *have dinner at a fancy restaurant
    *ride in a go-cart
    *visit a foreign country

    I hope you will have many days filled with smiles, laughter, and fun in your future. You are a beautiful, strong little girl with amazing parents. I will continue to follow your blog and share your story. You are truly an inspiration to live life to its fullest! Thank you for that.

    One more thing - if you post a paypal link on your blog or facebook, etc., I will gladly donate to help you cross more things off that list! :-)

    Alina

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  87. Hi Avery,
    I would love to help with some of your bucket list... So you are officially invited to a POOL PARTY! This Saturday April 21st at 2pm. We live in Webster, TX (Ithink thats not too far from you). And not only can you cross off swimming from your list, you can cross off attending a birthday party too! And maybe you and my son Rylan can dress up nd take pictures of you "getting married". He looks very handsome in a suit and tie. I hope you don't mind that he's a little younger than you. So ask your Mommy and Daddy, and if they say yes, tell them they can reach me at jessicapol621@gmail.com or 713-261-4030.

    Love,
    Jessicca

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  88. Hello Avery,

    A friend of mine passed your blog along to me and I couldn't help but post it on my Facebook wall to help your blog go viral. I live in Wisconsin and I know you already have attending a Green Bay Packers game on your bucket list (which the Vikings are waaaaaaay better...I am from Minnesota originally), but if you do get a chance to come visit Wisconsin, you should try to be here when there is snow! :) Then maybe you can add sledding to your list too! And while you are here, you might as well eat some cheese curds too since Wisconsin is famous for their cheese. I warn you though, once you have cheese curds, they will be your new favorite guilty pleasure.

    I wish you the best of luck in everything you do! Looking forward to hearing about your trip to Wisconsin! :)

    Best Wishes,

    Devon

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  89. Hi sweet Avery. I really hope u get on the Ellen show. I wrote her an email and hopefully others have too. Your a inspiration and so is your mama and Daddy. Thank you for making me realize that all my little problems are stupid. I hope you get to do every single thing on your bucket list sweetheart!

    God bless!

    The Carter family
    Nashville,Tn

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  90. Avery-
    You are such a beautiful little girl and have the best mommy and daddy god could have picked! I am so thankful I came across your blog and reading about everything you are doing melts and breaks my heart. And you have inspired me to enjoy the littlest moments with my 8 month old daughter Londyn (who would love to meet you!) even when she's spitting carrots in my face lol! I would be HONORED to scratch riding a horse off your bucket list. And it would be Londyn's first ride too! So maybe that's a double cross off? Go horseback riding with a new friend? PLEASE tell your mommy and daddy that I have a beautiful horse that is 'chomping at the bit' to take you on your first ride! Every Texas girl HAS to ride a horse of course ; ) my email is katieg519@yahoo.com I hope to hear from you and your amazing parents and hope I get the privilege to meet you! God bless and every prayer for you! Hope I see you soon!

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  91. Look into http://sire-htec.org/ for the horseback riding, they are a great group. I would love to help you on your first ride but do not have the proper equipment for such a young rider.

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  92. Hold and pet a furry little kitten...don't forget the pictures!

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  93. Come visit Build a bear In willowbrook mall!!!! We would love to be on your bucket list :) - Cece

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  94. Make fridge art. I thought of you guys last night when I was hanging up a turtle Deven made for me on our fridge. <3 Leah

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  95. My Avery Lynn and I are rootin' for ya!

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  96. Hi Avery, I hope one day you get cross holding a little sister/brother off your list. I have been so inspired reading your story. You are an incredible little girl and your mommy and daddy are amazing parents. I too am going to write Ellen and make sure she hears all about you. And I'm going to write the Green Bay Packers too. I know that would be number one on my husband's bucket list of things to do with his little girl. God Bless.

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  97. Sweet Baby ... also remember to play in the rain; get some wet puppy kisses and visit the zoo animals.

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  98. Avery you need to see an airplane up close, you can come tour the big airport in houston and see a day in the life of an airplane and a pilot. you will love it. wandoan@gmail

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  99. Have you contacted Make a Wish to help with some of the bigger things?

    Praying for you.

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  100. Be serenaded by a men's a capella group.

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  101. Please let me know if you are interested in riding a horse. We live in NW Houston and have a huge cattle ranch about 30 minutes past Tomball. Cows, horses, and more! Lizzyivey@gmail.com

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  102. Avery, please ask your Mommy or Daddy to contact me. I'd like to try to help you with one of your bucket list items. Also, I'd like to see what my team could do to help your foundation be more recognized.

    Email me please - info@houstonrollerderby.com

    Also, I think that you should add this to your bucket list.

    "Meet someone special who was born with a disease and has been courageous in their life." I recommend Reggie Bibbs - http://www.reggiebibbs.com/ He's a good friend of mine and I'm sure he'd love to meet you.

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  103. Avery...... Thank your mommy and daddy for sharing you with us.....
    Here's a few things to add to your list.......
    Go to Fort Worth Stockyard and sit on a longhorn , get kissed by a cowboy, watch the cattle drive,ride in a stage coach......
    Go to Sea World San Antonio and then you can swim with the dolphins, kiss a beluga whale and let the beluga whale kiss you.....
    Go watch the Rangers play ball......

    Make hand & feet prints with mommy and daddy...... Make ones out of paint so you can hang them on the wall, also make some that mommy and daddy can make out of stepping stones.....
    Make a garden and put your stepping stones in it......

    Keep smiling Avery...... Your a very special little girl who is going to change the world...... Sending you lots of hugs and kisses ......

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  104. I have a 6 month old baby boy and I could not imagine what I would do if this happened to him...... your mommy and daddy are very strong and loving parents..... I pray that your life will be filled with lots of love, hugs, and kisses,..... I think you should catch fireflies in a jar with mommy and daddy.... I know this is what I am gonna do with all my children... your story has touched my heart and soul..... sending you hugs, kisses, and smiles your way!! :)

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  105. Avery what an amazing little girl you are! I will do my best to help spread your story! To your mommy & daddy I commend you for your strength & determination! I'll pray for strength, peace, & comfort for you all through all life has in store. Have you thought about first bike ride? Maybe first fishing trip, or sleepover? Oh and my 3 yr old says you are such a pretty baby!

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  106. Avery- I went on to the Ellen DeGeneres site and submitted an email to the show regarding you. So maybe you can cross that one and meeting someone famous off your list at the same time. Maybe others will see this post and do the same thing to try and help in little ways we can. Be strong!!!!!!

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  107. My fiancee and I are getting married on October and we dont have a flower girl but would like to make you an Honorary Flower Girl for the occasion.... It would be awesome.

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  108. Hi Avery,

    Your story touched my heart. People will be more aware of SMA because of you. My suggestion for your bucket list: Watch the sunset at the ocean.

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  109. Hi Avery,
    I wish you lived closer so I could take you skiing and rock climbing with me. I could also bring you to the hospital to be a doctor for a day since I am sure you see lots of doctors in not so fun ways.
    I recommend building a fort in your living room and sleeping in it with mommy and daddy. Your life is a gift, and your suffering will not be worthless.
    We will keep working hard for you sweet baby, and all the others with this disease.

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  110. Mike, Laura and Avery,
    You are a beautiful family, and my heart breaks for you while, at the same time, bursts with the way you are enjoying life to its fullest. I have a few suggestions for your bucket list that some people wouldn't think were necessarily important:
    -Go to Kansas, watch the sunset over a wheat field
    -Go to South Carolina, watch the cotton sway in the breeze
    -Find a Naval Base (and, preferably, someone IN the Navy) and stand on the top of an aircraft carrier, looking out over the water.

    I never thought that those things would be high on my list of things that I loved more than anything, but they are. And, my husband is in the Navy, stationed in Virginia. I also have some friends stationed in San Diego. I think we could help if you chose to do that.

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  111. Hi Avery! I'm getting married in October! Want to be my flowergirl? I live in California though. :(

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  112. Avery,
    You are such an inspiration and have helped educate myself and others about SMA. I am a graduate from Texas State (just like your mom and dad) and played softball there. I talked with the softball coaches there and they would love to have you come out to throw the first pitch. The game is an evening game on April 24th (I know short notice) against UTSA. Please contact me at leahboatright@materapaper.com. I would love for you to scratch that off your bucket list. I'll keep you and your family in my prayers.

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  113. Avery you are an amazing little girl..my suggestion for your bucket list is fly on an airplane and see the clouds out the window! .. i saw you visited your grandparents in New Braunfels. Im from San Antonio my dad is a photographer we would love to help with a photoshoot :)

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  114. Sweet Avery,

    I hope you can achieve some of these dreams. A couple more to add:

    ~ Make mud pies
    ~ Look for shapes in the clouds
    ~ Make a wish on a dandelion
    ~ Chase down the ice cream truck
    ~ Become a Girl Scout
    ~ Go to the Riverwalk
    ~ Do an Olde Time Photo Shoot
    ~ Make mommy a hand print "flower" bouquet
    ~ Play in mommy's make up

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  115. Splash in the ocean

    go to a butterfly zoo

    build a sandcastle

    hold a new born kitten or puppy

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  116. I hope you can do everything on your bucket list and I'd like to add this too it.

    - read a good book take an adventure that you won't want to get out of. Enjoy the story and be the character in that book. Get out of this world and into the fantasy of another.

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  117. Hi Avery,
    Go to Prom. Your daddy looks like he'd be a fabulous date but I'm sure there are boys who would line up to dance with you.

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  118. Sweet little Avery,

    Your story has touched my heart and brought me to tears. I don't know much that I can do to help - I will post about you on my blog in the hopes that it will bring some traffic to your site and help you reach your goal of spreading awareness. I will be following you, precious, amazing little girl.

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  119. I'm from Oregon and would love to help Avery accomplish everything on her list. She is such an adorable little girl. You are a wonderful family and I hope you enjoy every moment with your darling girl and get years of them. Maybe she will be one to beat the odds! I emailed Ellen, so hopefully that helps :) everyone needs to know about SMA.

    And I agree with the post above, go to prom. Also, go on a cruise. Visit as many states as possible. And if you're ever in Oregon I'd be happy to show you around :) oh, and go to the top of the space needle.

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  120. I may not be famous, but I am a Miss America local title holder in California. My platform is the Muscular Dystrophy Association and am applying to med-school this summer so I can be a pediatric neurologist like McSteamy. If you let me know when you plan to go to San Diego I will do my best to have you meet the current Miss California (she's hosted in San Diego) so you can say you met someone who competed for Miss America! If you wait until after June it might even be me! Sending lots of hugs, prayers, and love your way precious!

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  121. I wish all things for little Avery and am sending prayers your way.

    With summer around the corner I'd love to add Go to summer camp and play in the ocean to her list.

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  122. Sweet baby Avery,
    Your story brought tears to my eyes, not in sadness although I am truly sorry that you are so sick; but because you and your family are living your life and making it into something special something unique. Not many would be able to do what you and your family are doing. For that you all are special. I had a friend growing up who was affected with SMA although he had type two. He almost made it to his high school graduation, you and him dear Avery are a lot alike, his name was Chris, and he was powerful in his own right. He inspired people, even with the challenges he faced everyday he would light up when he was around me, he is the one that taught me how to add and subtract he was my hero and he is part of some of my fondest childhood memories. He was a few years older, my brothers age. When he passed, and his intended graduation year came around the school let him graduate.
    It is important to get your story out dear Avery, and I personally am thankful to have read about you and your life, your bucket list, and the fact that despite what you are challenged with you are making it count.

    Now Idea's for your bucket list...

    1. Every little girl should play princess,

    2. go to Disney land and be a princess for a day,

    3. Have a princess marathon with all your friends and family there, watching... Beauty and the Beast (my personal favorite), The Little Mermaid (another one that played repeatedly in my house and drove my brothers bonkers) Sleeping Beauty, Snow White, and of course Cinderella!! :)

    4. Hold a kitten, Name a kitten, listen to a kittens purr.

    5. Have as many best friends as possible. (My little boy thinks everyone is his best friend)

    7. Adopt a cabbage patch baby

    8. Play barbies

    9. Get into your mommys make up and make yourself beautiful.. (I remember when I snuck into my moms make up and covered all my freckles with blush, because I just wanted them to all go away.)

    10. Give your mommy and daddy breakfast in bed the way every child should. cereal bowls spilling over with milk and cheerios, burnt toast covered in jam, dandelions from the backyard, frozen waffles that just didn't get cooked long enough and covered in tons of syrup!

    11. finally sweet girl, Make memories, fill everyday with smiles, and remember to tell your mommy and daddy you love them in every way you know how. Smiles, hugs, kisses, words, and laughter.


    I will be checking back to see how your list is going sweet Avery, and maybe soon I can help you along with one of your items to do.
    My prayers are with you and your family.

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  123. Hi Avery,

    We’re almost the same age. Ok, you are a few weeks older! You should add "Make my fingerprint into a necklace for Mommy so she can always have me around her neck.” My Mommy has one and she really likes it.

    I’ll be praying for you!

    -Sawyer

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  124. Hi Avery!

    Today I sent out something that will help you cross a few things off your bucket list! Check your mail box it should be there in 7-10 days!!

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  125. Oh and P.S. You should have a star named after you!! How neat would that be?

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  126. Have a paint fight and design your dream house

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  127. Hi Avery,
    I am 18 months old and I will tell you some of my favorite things, so maybe you can get some more ideas for your list:

    Say Mama and Daddy
    Squeal with laughter over your own humor
    Make Mama sing Old MacDonald and ABCs 5x in a row
    Make Daddy read the same book 5x in a row... then one more time
    Tell Mama and Daddy NO, just cause you can
    Read Mama and Daddy's favorite classic children's books with them, even if they like it better than you do

    Mama and I will be praying for you.
    Love, Sianna

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  128. I so hope they are wrong on the 18 months...keep your spirits and hope high...and you never know...and today I found out that those timelines they give you...may not be right!!!

    If I lived closer I would do the photoshoot with you...you would look adorable in some of my photography props...another for your bucket list...wear high heels for absolutely no reason!!!

    I will think of you often baby girl!

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  129. I have a friend who wanted to comment but could not. Her suggestion for your bucket list is:
    "be princess for a day complete with tiara"

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  130. Dearest Avery,

    I didn't see anything in there about your career plans so, I would like to offer you your first job. I'd be honoured to have you as my assistant Community Manager with the company I work for. I won't mention the actual company here, because I wouldn't want anyone to think I'm trying to promote us.

    You can start right away and your first task will be to gather all the love you can and live all the dreams you can with as many of your loved ones as you can. Please keep me posted on the progress.

    And guess what? You've already won employee of the year! If one of your older friends can tweet me @hugeheadca and tell me where to email the certificate, I will email it to you.

    Regards,
    jim

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  131. I would like to know where you would like to go to get your Get a mani/pedi so that i can send you a gift card:)

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  132. Dear Avery,
    I stumbled upon your page a few weeks back and have been reading your story. I have posted your story on The Ellen DeGeneres Show Facebook page and on Kathie Lee and Hoda's page. I hope to raise awareness for you and to help cross off a few bucket list wishes. (Kathie Lee and Hoda have had songs written about people). I will also try to think of some other ways to help you out. Keep smiling and keep fighting little one. *HUGS*

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  133. Dearest Avery: You must be the youngest teacher in the history of teaching! I think it is your destiny. Look at how many people you have taught about SMA. I have been a nurse (I worked in the Coronary Care Dept. healing hearts) since 1980 and have never heard of this disease. Thank you for teaching me about SMA. I love your family and you picked the best parents to support you in this journey. I would love to see a photo of you in a Sparkly Tiara like a princess would own. That would put a big smile on my face for sure! Stay strong Avery! Love ya to bits♥♥♥
    P.S. I come from a small island of the tip of Nova Scotia, in Canada, called Cape Breton Island. Your story is going around in our area now. It came via Fort McMurray in Alberta, Canada. If you ever travel to my Island, i would love to paint your finger and toe nails with little ducks!xx

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  134. Dearest Avery, Your story is so touching and your family is amazing!! I have something you should add to your bucket list, be able to be in 4 states at one time!! When you make it to the grand canyon you should detour our way and visit the four corners monument!!
    XOXOXOXO Silas (4 months old) and his mommy

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  135. Avery, I am a local Kingwood photographer and would love to do a photoshoot of you trying in your and mommys clothes. :) you can contact me at meag.millerphotography@gmail.com. I would be honored to donate my time and services for you:)

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  136. Go to Disneyland and take smiley pictures with all your favorite Disney characters.

    Rizza from MD

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  137. Dear sweet Avrey,
    My daughter and I are traveling on an Amtrak train from Fort Worth, Texas to Maricopa, Arizona. (August) We would love to take you along. I didn't see it on your list, but it is always fun to add stuff.

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  138. Hi Avery, a few things you definitely should do; baking things with Mommy on a rainy day, drawing on the sidewalk with chalk, and looking up at the clouds and finding animals in them, making s'mores around a campfire, going camping with Mommy and Daddy, and touching the hearts and minds of thousands of people around the world. I've got to say, you've already done the last one. You've taught thousands of people to enjoy the simple things in life. That nothing is guaranteed and we should enjoy the time we have with our loved ones. Thank you, Avery.

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  139. Hi Sweet Avery!
    I just found your blog today via FB, and I've read through quite a bit of it today. Forgive me if I repeat anyone else's suggetions for your list, but a few things came across my mind and I wanted to share them with you. Here are my ideas: #1. Every little girl should get to go to an American Girl store! I'm not in ANY way affiliated with them, but it's just SO cool to be surrounded by all those dolls and their outfits, and all that 'girly' stuff! You can even pick out a doll that looks like you and get matching outfits! I don't know if you have a store anywhere near where your Mommy and Daddy live, but if you do and you're able to go sometime, let me know - we'd like to get you a gift certificate to help you get your 'look-alike' doll! #2. Bake cookies for Santa and leave them out with a glass of milk and a note for him. I've heard that his reindeer like carrots so you could leave some of those as well for him to give to them. Then you should stay up late and listen to see if you can hear his sleigh bells. The next morning, check and see if he ate your cookies, I think sometimes he even leaves thank-you notes when someone special makes him some extra-yummy ones that he really likes! #3. Watch the movie 'Dirty Dancing" it's every girl's right-of-passage! #4. Take your Mommy and Daddy to a tattoo shop and watch them get tattooes of your feet or hand prints with your name and birthdate in a pretty font with your favorite colors. #5. Lastly, when your Mommy and Daddy don't know you can see, spy on your Daddy slow-dancing with your Mommy to their special song. Watch closely to the sweet way your Daddy holds your Mommy tight and how she looks deep in his eyes with lots of love. Remember what this always, because it will show you what soulmates look like when they find each other. The love you'll see is the love that brought YOU into this world and is the kind of love that you will want to find for yourself when the time is right.
    Those are my suggestions for your list. It might sound strange since we've never had the chance to meet, but I want you to know I believe in you! And can you please tell your Mommy and Daddy that I believe in them, too? I'll be following your blog closely to get the chance to see all the amazing things I know you're going to get to experience in your life. I'm so glad I found you and want you to know I'll be spreading the word to help you get your story and your cause out there as much as I can! Thanks for taking the time to read my thoughts!! You go, girlfriend!!!

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  140. Avrey,

    Tell mom and dad to add "ride on a Harley Davidson" to your bucket list if it's not there already. Im sure the biggest and baddest biker in town would love to give you a ride sweetie. Just look at him with those amazing eyes and give him that smile. He'll understand.

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  141. Have that Sweet Sixteen Party and go to Prom....take lots of pictures.

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  142. Aloha!

    I looked for an email or contact link but couldn't find one. I am a cast member at Disney World. I would like to help your family recognize a few of your dreams. I can't offer much but what I'd like to speak to you about what I can offer. How can I contact you?

    Lei

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  143. Run wildly to shore because the sand is burning ur feet!!

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  144. Avery,
    I have a few suggestions:

    Go to the Macys Thanksgiving day parade
    Be a grand marshal in any parade
    Get sweet puppy kisses
    Catch fireflies
    Get a brain freeze from a giant slurpee or ice cream
    Ride the Thomas the Train or Polar Express trains that goes through some towns
    Have a water balloon fight
    Have a pillow fight
    Go to a shoe store and try on everything in your size
    Play a April fools joke
    Break a pinata
    Have a spa day

    I will keep thinking on some more. Avery you are an inspiration and my little boy Blake and I will pray for you and your family every day. I can't wait to see more items crossed off your list sweet baby.

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  145. Sweet precious Avery- You have to see the Circus. You need to have your first ice cream cone and cotton candy. Running barefoot on the beach in the rain. picking flowers for Mommy and Daddy. Seeing your first Rainbow.Singing a song just for Mommy or Daddy. Making foot and hand inprints with mud/clay.
    I send my blessings and prayers to you and your family. May God continue to bless each and every day with Avery. Many blessings and Prayers coming your way.

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  146. God Bless your family and especially Avery. This is not only an amazing story, but a great thing you are doing for your baby and yourselves. When she is gone, you will have some awesome memories.
    I just love reading the blog, and most of all her bucket list. God Bless you all.

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  147. I think Avery would love to go to a country fair and eat Cotton Candy and ride a Merry Go Round.I'm a morning person also.

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  148. Hi little miss adventure girl. Ok here's my idea... MUD RUN!!! You would love it. You get to slip and slide and generally get MUDDY and nobody get's mad at you for it. Tell your mommy and daddy you think it would make a great family photo as well.. ALSO, while your at it.. make a few MUD PIES.. I used to make em and try to sell em to the neighbors.. complete fail but automatic fun. mucho affection little sister.

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  149. Hi Avery your a very pretty little girl. I saw your wish to be asked to prom, my prom is may 5th next Saturday and I am going to make sure my friends and I have the times of our lives for little girls like you who will never be able to to prom. If you lived here or I lived there I would gladly ask you to prom

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  150. I read your bucket list and my fiance started thinking we should move the date up just so we can invite you to be one of our flower girls the other would be my little girl shes only three months older than you her name is elena we call her elli belly she loved your tea party. your a real inspiration and I'll be sending letters to Ellen for you I'll hold you in my prayers like I do my daughter and send donations for you list and cause when ever i can

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  151. I think I can help you with the haunted house! My family and I are ghost hunters!

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  152. Dear Avery, I am so touched by how strong you and your family are! After reading your first post I just knew I had to suggest something for your bucket list! I am a mommy to 3 year old twins and one of the things I want to do with them is travel to every State before they are 18. I think you should have this experience as well! I am in the sate of MI and will be sending you a post card from MI that I will leave blank so you can write to Mommy and Daddy about all the cools things in Michigan. And ofcourse you must take home some souveniers too :) I hope all your new friends in other states will help you visit their states as well!
    Take care Sweetheart and have fun traveling!
    <3 Kathleen

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  153. Hi Miss Avery. Wow you sound like a very busy girl! How about laying on the roof in a warm fuzzy blanket and look at all the stars! Oh, and of course...a puppy :)

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  154. catch lightning bugs (they have them in the north)
    make a snow angel
    get into mommys makeup
    make a cake
    decorate cookies
    go on an airplane

    may god bless you and your family
    much live and prayers from michigan

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  155. Hi Avery-
    I read your story and I have an offer for you to help with your list. You have written that you would like to walk in a charity event...I am creating a team right now to do just that. I would love to have you as part of our team. The event is in Atlanta and it is for MADD (Mothers Against Drunk Driving) and we have spots for virtual walkers! Have your mommy or daddy email me if you are interested. If you could make the event, I think you would really enjoy it, but if you can't, you are still a member and you can walk through your favorite park with one of your new puppies!
    madd-for-brandy@hotmail.com

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  156. Avery, if you get Crayola Window markers you can draw all over the windows and mirrors! It's not the wall but it's close ;)xoxoxoxo little darling!

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  157. I don't know you or your family, but would like to invite you to my college graduation. I live in Wichita, KS and will be graduating with an Early Childhood Education Degree from Butler Community College. I know going to a graduation is on your bucket list. It is on May 12, 2012. If you want more information please email me at lkbworggah@yahoo.com. Thanks! Good luck on completing your bucket list!

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  158. Avery, knock that 5K off your list. We are doing better than that. I am running the New Jersey Marathon on May 6th (26.2 miles) with you in my heart and your name on my shirt. We'll cross the finish line together. The marathon is a beach marathon, so you can knock that off your list too. As a mother, your parents are my new heroes.

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  159. I have a few ideas for your list.
    * help Mom in the garden
    * play with worms and rollie pollies
    * pick flowers for mother's day
    * unroll the roll of toilet paper
    * drop toys in the toilet and try to flush them
    * listen to wind chimes
    * when you go camping listen to the tree frogs chirping
    * since you are a morning person - see the sunrise at the beach
    * be the first one up and make a huge mess with a box of cereal
    * play games on the computer (my big brother uses a tough screen or intelikeys instead of a mouse or keyboard)
    * watch silly animal videos on youtube (try cat printer - that one makes me laugh)

    <3 Randy (4yrs old) & Mommy

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  160. Take a photo with Mickey at Disneyland.
    Cross the Golden Gate Bridge in San Francisco.
    Visit the SkyDeck in Chicago.
    Go swimming in the pool.
    Ride a bike.
    Have a surprise birthday party.
    Help mommy and daddy cook.
    Ride in the driver's seat and take control of the steering wheel.
    Countdown to New Year's.
    Kiss someone at New Year's.

    Much LOVE!<3

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  161. I live in Green Bay WI, and I would LOVE to help to get you guys to a Packers game!!!
    Chrissy Hyde

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  162. Avery, You are such a darling! I just wrote on your Facebook page but thought I'd write here too. I'm getting married in June and would love for you to be a flower girl in the wedding. I live way up North in the Upper Peninsula of Michigan but if you came we could cross off so many things on your bucket list. The wedding is on the beach (Lake Superior-largest lake in the world-it's pretty cold even in the summer but you could put your feet in!), there will be horses and a carriage, a bonfire and S'mores, boats, kayaking, and you and your brave mommy & daddy could go camping and count LOTS of stars!
    I'll send you an invitation! And I will pray for you and your family. Good luck Sweetpea!
    Lots of love,
    Heather

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  163. Pat a real live bunny.
    Catherine B.

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  164. Just a suggestion to painting a picture for my Mom & Dad.

    Lay her on a piece of paper and trace around her.

    Place her little feet and hands in non toxic paint and place on paper or canvas. (this was given to my as an anniversary present of our youngest grandson)

    We have a friend that took his girls outside (when mom wasn't home) they were painted legs, feet, bottom, back and hair, arms and hands and laid down on a canvas. I was told it is a gorgeous painting.

    Let Avery play with the paint on the edge of the picture and you will have a true treasure.

    Nana Rogers

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  165. In thinking of the things I would put on a list for my own daughter, I have these Ideas:
    ride in a hot air balloon
    fly first class
    do random acts of kindness
    plant a garden
    play the slots in Vegas
    have my own child (maybe through a child sponsorship program)
    Ride the Christmas Train (there is a great one in Dry Gulch, Oklahoma, it's amazing)
    write a book- mom and dad might have to actually be the ones to write it someday
    go bowling
    visit a Hibachi restaurant (the "show" part of the meal is amazing to kids)


    I could help with "ride a horse"- my brother has a ranch near Breckenridge, Texas, and my dad has a ranch in Bartlesville, Oklahoma. Those are several hours from you but are open invitations if you'd like.

    For the painting part, I just made one with my 8 month old daughter by putting construction paper in a big ziploc bag. I made big blobs of paint on the paper before sealing the bag. Then I taped the ziploc bag on the floor and let her smush it with her hands. This might be a good way for Avery to paint, too. I cut the edges off the ziploc bag and let the paper and paint dry totally with the plastic still on the top of the painting, then peeled off the plastic. This made a pretty painting, much prettier than the way it looked when I tried to pull the plastic off the wet paint.

    Avery, you and your parents are just amazing. I wish I had the words to express how inspirational you are. Thoughts and prayers with your family, and I already wrote Ellen twice tonight :)

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  166. feed a giraffe :) I did it and I loved it.
    be in a flash mob! maybe even hire your own flash mob to raise awareness for SMA. http://www.flashmobamerica.com/hire-us/
    I would offer to help with the photo shoot fun but I'm only an amateur. I do it for fun and hobby.

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  167. I am making it a personal mission of mine to help you reach as many goals as possible. I will be praying for you all!

    A few things that I think you may want to add:
    * Wake up early and watch the sunrise
    * Spend New Year's in Times Square
    * Break cascarones on Mommy & Daddy's head
    * Go skinny dipping
    * See a Broadway show
    * Visit the Walk of Fame

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  168. Found you today through yahoo. Have cried reading your posts and looking at your pictures. It breaks me to think of Avery leaving this world and all that is has to offer. Part of me is jealous of you and your ability to spend this time with your daughter, my son died of a brain injury at 3 1/2 days old and took his last labored breaths in my arms. I cannot think of what I would not give to have had the chance that you have now with Avery. Life can be horrible, but it can be beautiful also, thank you for taking the opportunity to help her live each day as if it is her last, and as if it is the most important.
    love,
    Mindy

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  169. Dance in the rain
    Catch snowflakes on your tongue
    make snowangels in the snow

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  170. Hi Aves! (I know your dad calls you "Aviater" and that's cool but you need a "girlfriends" nickname... :-)
    I know a boat ride is on your list. I live in San Francisco with my husband and two little boys (they are handsome and would LOVE you, btw..) Want to come ride the ferry with us and see Alcatraz? Owen and Will's daddy travels a lot so we have lots of miles to get you and your mom and dad here.

    Also, thanks for teaching me about SMA. You are making the world a better place through awareness, Avery. That's a big one for your bucket list.

    xo, CC

    PS Tell mom and dad that I am totally serious about that boat ride!!!

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  171. I am so touched by your story!!! But I do have an idea that you can use for mother's day!

    Make breakfast in bed for Mommy with Daddy.

    I bet she would just love it!

    Another idea is dress up like a princess and see a castle.

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  172. You should add visiting Philadelphia to Avery's bucket list. I am getting married June 9, 2012 and would be delighted to have her as my flower girl.
    Lori

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  173. lay in the grass staring a the clouds

    have a puppet show

    be in a parade

    be in a pageant

    have a water balloon fight

    smash a pie in someones face

    go to a drive in

    go to a concert without mommy and daddy knowing

    skip school and watch movies with mommy and daddy

    make a fort in the living room

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  174. Here's hoping you hit 1,000,000 views today (4/28/12)!

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  175. dance on your daddys feet
    tell a secret
    stand behind a fan and talk :)
    pick wild flowers
    scream from the top of a mountain to hear your echo
    play pretty pretty princess game
    meet someone new everyday
    hoola hoop in a store
    bake a cake
    do handstands against the wall
    do a cartwheel
    make friendship bracelets for you mommy and daddy
    have a costume party
    ride in a fire truck
    Meet a soldier

    Can't begin to tell you how lucky I am to have come across your story. As heart wrenching as it is, I had a warm smile on my face with every word I read. As a mother of two this touched me deeply and has reminded me to enjoy every moment small or big in life. I will be creating a bucket list for my children as well, that way we can live our life to the fullest just like you Avery! I've posted your story on my facebook to help spread awareness. I can't wait to see all your new memories you make<3

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  176. Things my little girl loves and has remembered... See the ocean, ride a horse, see the circus, maybe something to do with birthday cards, have a picnic, play airplane with mommy and daddy.

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  177. Things my little girl loves and perhaps you should try, Ride a horse, see the circus, swim in the ocean, play air plane with mommy and daddy, play with toy cars and in a sand box, build a sand castle, see Disney on Ice, go to build a bear work shop. Good luck little avery I Hope you get to do every single thing on your list. And God Bless you Little one.

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  178. * Cut my own hair, when Mommy's not looking.
    * Play in the dirt in my prettiest dress.
    * Feed a newborn calf.
    * Get into Mommy's makeup.
    * Hold a baby chick.
    * Go on an Easter egg hunt.

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  179. Finger Paint
    Find a Penny on the ground
    Leave a Penny for someone else to find
    Make a wish in a fountain
    Have a pet (every kid needs a fish)
    Dress up like a princess
    Buy your first pair of high heel shoes
    Play with Balloons
    Let a Balloon go with a wish attached
    Wish on a shooting star
    Try on a wedding dress
    Try on a prom dress
    Take one photo in the same spot every day of your life to see how much you grow and change.
    Inspire others to do more with their children (this one you can cross off)

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  180. Hi sweat heart; my name is Miguel, I just read your story on Yahoo when I was at work (don’t tell my boss). I am really sad of what you are going thru. I am a father of 3 girls and a baby on its way, my oldest is 23 named after Nikki Six from Motley Crue, Michelle is 20, and then the youngest one Isabela she just turned 1 last month. If something bad ever happened I would lose it, but reading how happy you are and trying to complete your list (some of them make me LOL). This makes me love my girls more and more, and shear with them as much as I can with them. I hope you get to accomplish all in your list. God bless you my love. Oh here are my suggestions for your list;
    Stars a comic book collection
    You have to see all of Star Wars
    Ride in a military vehicle
    Get autographs of famous people
    Go to a WWE event
    If there anything else you need help with let me know, I live in Tennessee. Take care.
    Miguel

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  181. AVERYYYYYYY!! :D <3 :) :) :)
    -----------------------------
    Your bucket list is absolutely fantastic! Its got almost anything anybody could ever want to do on there! Since your wee little fingers couldn't possibly have typed all this up, I'd have to say you've got the best, most thoughtful parents in the world. I will hope and pray everyday for you! And I'll keep checking back! You're blog's added to my favorites list!
    And in the mean time you can think about adding these to your list. Everyone wants to do it big right? But its also the little silly things that count. Those "YOU JUST HAD TO BE THERE DUDE!' kind of moments. I hope you have alot of those!


    -Squishing your toes into the sandy ocean floor

    -Eat an entire pizza!

    -Burn a batch of cookies by accident

    -Spending your first dollar

    -Trying to lick your elbow

    -Spilling milk all down your shirt

    -Tripping over your own feet

    -Smell the air after a thunderstorm

    -Get your mouth stuck full of peanut butter

    -Painting your toenails rainbow colored

    -Unrolling an entire roll of toilet paper

    -Pulling all the tissues out of a box

    -Seeing how many pieces of bubble gum you can fit in your mouth

    -Doing chalk drawings allll over the sidewalks

    -Pull a prank on moomy & daddy

    -Catch a butterfly

    -Drop a quater in the toilet

    -Give someone a wet willy :D

    -Roller skate

    -Make jokes about mom & dad's early morning hair do's

    -Stick something you probably shouldn't up your nose

    -Watch roses float in a bowl of water

    -Get sock fuzz between your toes

    -Have a conversation by only smiling

    -Have a staring contest

    -Have a bad hair day

    -Buy a pet fish

    -Get your Hogwarts acceptance letter

    -Have an invisible friend

    -Bury some treasure in the backyard

    -Go to the Circus

    BE STRONG BABY GIRL!! :D

    KariiLynn:)

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  182. Hey, Avery! So, if you come to Austin to see 6th Street, you could also drive not that far north to the ROCK, or Ride on Center for Kids, in Round Rock, Texas and check off "riding a horse". I've never been there before, but they do all sorts of therapeutic riding, I'm told. Here is their website: http://www.rockride.org/ As a lifelong equestrian, I can tell you that there are very few joys like the freedom of riding a horse through the Texas sun.

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  183. By the way if you want to come to New York.. you are more than welcome to stay with us!! we can go see the Empire State Building, all the bridges, The Statue of Liberty, Central Park, Coney Island.. all the fun stuff!! and we can take so many pictures!!

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  184. This comment has been removed by the author.

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  185. p.s. PLEASE erase my previous comment (white house connections) rather than keeping it posted - i don't need people emailing me about this other than you. ;-)

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  186. Hello.
    This story has really touched me .. as I'm sure it has many people. I come to y'all from winnfield Louisiana ..and I have a 3 month old baby girl . Like y'all I had never heard of SMA. I know now thanks to y'all. I saw something on the bucket list about riding a go kart ..my two brothers race go karts ..I don't know if y'all would be interested but it would he an honor for my family to help scratch one more thing off of the list. Tuggles racing goes back very many years ..not only do my two brothers race go karts here in the south but my cousin races dirt track cars. If this would be something y'all would like to do were here doing our thing on the race track every Saturday and would love for y'all to join. Email me if u want to go fast ;) ... cheriepolk75@Gmail.com.
    With much much love smiles and kisses ..
    Lollipops racing (my parents are called lolli and pop by their grand babies..hints the name)
    /Tuggles racing team from Louisiana! !!!!

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  187. Hello beautiful girl.
    My heart goes out to you and your family.
    Hearing your story makes me hold my two little ones so much tighter.
    I've taken the unguaranteed time I have with my children for granted.
    I'very never make it a habit of following blogs before, but I will be following yours
    and be praying for you and your family on your journey. <3

    I'm in Las Vegas, Nv and your blog is being featured as the top news story on Yahoo home page right now!
    I think you could add that to your bucket list. ;)
    Maybe you can add a Vegas trip to your bucket list, and if no one has suggested it yet,
    a first trip to Disney Land.

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  188. Have Daddy take you to your first ever movie at the theatre.. make sure you pick something really girly he'd never sit through otherwise ( my Dad took me to Beauty and the Beast!)

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  189. I pray for you and your family Avery. May God Bless and heal you. Here's a couple of things for your bucket list: Watch a BIG fireworks show on the 4th of July. Have a taco party with friends.(no hot sauce)Go parasailing and lastly...catch a fish!

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  190. Hello Miss Avery! You are a beautiful little girl, and your Mummy and Daddy are so lucky to have you!! I read about your story on the Daily Mail news website, and had to learn more about you, and about SMA! If you are ever in Pittsburgh, I am a baker, so would love to help you bake cupcakes, and we have a wonderful zoo/aquarium here to visit! :-)
    Much love to you and your family baby girl!
    xxooxxooxxoo

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  191. Hi-

    My father lives in Madisonville, Tx. He is in the rodeo business. He could totally set up Avery carrying out the American Flag on the back of a horse (someone riding with her of course). That would be pretty cool to have on her bucket list! Contact me if interested! kasey_tctalent@hotmail.com

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