Monday, May 7, 2012

Avery's Celebration of Life

SMA ended Avery's life, please don't let it end her story.  Each time I post an update, please share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.  And to all of Avery's girlfriends out there, tell your Ob/GYN about Avery's story and maybe they'll routinely start offering SMA testing.  If we can help save a few of Avery's future friends and their mommy, daddy, and loved ones from SMA, then Avery's life, while cut short in time, will be beyond fulfilling in stature.  

Thank you to everyone who was able to be a part of Avery's celebration of life this past weekend.  For those of you unable to attend, we know you were there in spirit and we appreciate your continued love for Avery.  After the service, numerous people approached me and told me it was probably the most inspirational and moving moment in their lifetime.  The fact that Avery can continue to inspire people even after she's passed...I don't even have words to describe how it makes me feel.

Avery's celebration of life went exactly as envisioned.  From the words being shared, her song being played, flags being waved, the balloon release, and the police shutting down major highways to get Avery to her final resting place, it was all just a truly touching experience and in my opinion an appropriate send off to an amazing little girl.

Below is the eulogy I delivered to the attendees at Avery's funeral:

11 Years ago when my mom died from cancer, I stood before her loved ones and I uttered the words, "Let's be happy for her now, as she was never going to get her life back.  There will be plenty of time for us to be sorry for ourselves later, but for now, let's just be happy for her."

Today as I stand here in front of all of Avery's loved ones, I cannot utter these same words to describe how I think we should all feel.  Not because I don't believe we should all be happy now and sad later, but because I believe Avery lived the only life she ever knew and she did it very well.  Avery showed us what it means to be courageous, she showed us what true love is, and she taught us many other lifelong lessons.  And even in her darkest minutes, as she was being rolled into ICU, she looked up at her nurses and she reminded all of us how to keep smiling.  So as I stand before you, I will tell you that if I shed a tear today, it's not a tear of sadness for my daughter's passing, rather it's a tear of pride for what my daughter accomplished in her living.  Simply put, Laura and I are the proudest parents in the world right now.

Before I share one of Avery's final messages to us, I want to share with you a few comments from other parents within the SMA community.  Some of these are parents within the SMA community who have started non-profits to help bring forth awareness & funding for a cure for SMA.

Avery, to me you will always be our most famous SMA celebrity.  You didn't charm the world with your song, or dance, neither with your poetry or prose.  You charmed an entire planet just because you existed.  Your sole essence as human inspired and changed the heart of MILLIONS.  I don't know of any other kid in history that in such short age transformed minds, perspectives, visions of life and dreams of so many.  You are genuinely unique.  Thank you for being part of my life.  You definitely affected change in an unprecedented, yet wholeheartedly manner.

Donations are coming from Avery’s hometown in Houston to Mexico, to Columbia to Australia to The United Arab Emirates.....AVERY has circled the globe and has taught the WORLD about SMA.... I have prayed every night for this kind of awareness.  With tears in my eyes I am in Awe of Avery.

Avery and your family have touched millions around the world, raising incredible awareness of SMA and reminding us all to cherish every second and live every day to the fullest.

Avery your impact is miraculous.  What made your message so poignant was the way you presented your story and your journey through this disease. In an almost unfathomable way you took the most darkest, ugliest thing imaginable and miraculously delivered it in a light hearted way. THAT is what the world connected with. That is why you changed this disease. That is why you were able to accomplish what nobody else has ever even come close to accomplishing. 

Avery, I will never let the SMA community forget what you did for them EVER...NO One has ever done this and for as long as I live, the community will know what you have done Avery.  We have all been praying for a break for so long, thank you Avery for your bravery.  I am forever in your debt.

Here is Avery’s letter…

Dear Mommy & Daddy:
If you're reading this it is because I've gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents.  I hope you know that I love you veeeeeeeeeery much.  Also, tell Nana & G-Pa I love them too.  In fact, tell everyone who loved me that I love them and I appreciate them caring about me.

Daddy, remember how you used to tell me that writing stories was a lot easier than giving speeches, but you hoped one day I'd be strong enough to give a speech?  Well since I'm not here to give this speech I hope you can remember the advice you gave me and just imagine everyone in the room is in their underwear.  First of all, ewwwwwww.   Secondly, sorry to ask this daddy, but by any chance is Dr. McSteamy, any of the Bellaire Fire Dept, or my catcher friend Octavio Martinez here today?  If so, hubba hubba hubba.

Annnnnnnnnnyway, like most of you, I'd never heard of SMA prior to being diagnosed with it and I don't think SMA had ever heard of me either.  But now that we've become better acquainted, I hope to do to SMA exactly what SMA has done to me.  And I hope my daddy was right when he'd say to me, "Don't worry Scuttlebutt, we'll make sure one day that SMA stands for Shoulda Missed Avery."  And when people think of me, I hope they’ll also think of all my friends who have been through this and who are going through this now.  But what I really hope for is that people will STAND UP in honor of me and spread awareness to prevent this from happening in the future while at the same time helping to fund a cure for my friends already going through this.

Before I conclude, I want to say thank you to everyone who helped me through life and who loved me.  Please know that I hope I was able to help you and that through each of you I will continue to live.  And to all my SMAns, you followed me, now please continue to follow all of my friends!   

In conclusion, Mommy.  Daddy.  I love you every bit as much as you love me.  And while I'm not here physically, I will forever live in your minds, as you will mine.  Mommy please take care of daddy.  Daddy please take care of mommy.  And before I say my final goodbye, there was one thing I waited to add to my bucket list until I felt the time was right.

I want to be a big sister someday.

With all of my love,

Avery Lynn Canahuati

Needless to say, Avery inspired Laura & me like we’ve never been inspired before.  Her beautiful blue eyes lit up our house and her smile engulfed every emotion in our bodies.  Her presence on Earth while short in time, will be fulfilling in stature and everlasting in our memories.  We want to thank you again for accepting Avery into your lives while she was here and for letting her live through each of us now that she is gone.  We sincerely feel the love and support and we know from what you all have told us that Avery has made an impact on each of your lives as well as millions of lives around the world.  I leave you with this…

“There’s nothing we control in death.  But we control everything in life.”

Make the best of yours.  If not for yourself, please do it for Avery.

Thank you.


Once that goal has been achieved, Avery asks that all monetary donations be made in her name to Fight SMA (www.fightsma.org).


THANK YOU TO EVERYONE FOR LOVING AVERY, SUPPORTING US, AND HOPEFULLY FOR SUPPORTING AVERY'S FRIENDS WHO ARE STILL OUT THERE!!!

Items We Helped Avery Scratch Off Her Bucket List:
1. Celebrating her life to the fullest
2. Shutting down two major highways in Houston (sorry!!!)

Up Next:
Whatever I bring to life, because I just don't have time to wait for life to bring things to me.

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 you feel 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)

Cure SMA (
www.curesma.org)

Sophia's Cure (www.sophiascure.org)


Thank you!

88 comments:

  1. Muah! Muah! Muah! We love you Avery thank you!

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  2. Very moved by this, thank you for sharing! Thank you so much. You have no idea the difference Avery has made in my life and the way I view things!

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  3. Your (Br)Avery is truly deeply life changing, I tell everyone I can about Avery, and I cry every time! Here is to hope...hope for a cure, and hope thatnAvery will get her wish to be a big sister. Much love to your family from mine. Teresa B

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  4. That was beautiful. I have thought about Avery every single day since I found out about her story and I miss her so much, as I'm sure you do. She touched my heart in a way that I cannot even begin to explain. Avery was so blessed to have you and her mommy for her parents. I wish I could give each of you a BIG hug right now! XOXO!!

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  5. I'm trying to do my small part, in Avery's honor, to make the world a better place.

    9 months ago I hemmorhaged after giving birth to our last child and nearly died. I've struggled in the months since with how to live a life that was miraculously given back to me.

    I've come to the conlusion that sometimes all you can do is put one foot in front of the other and give others the best of yourself.

    We have three little ones and are foster parents as well. We have a new little girl staying with us and I've been thinking the last few days how I need to face each day with JOY, even though the tasks seem mundane, because that's how Avery lived!

    Thank you for the inspiration, Avery!

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  6. It seems God's purpose for Avery was served while she was here in the physical world. She will now play for eternity in the Kingdom of Heaven!!! Her life continues to inspire millions. You guys are Amazing parents!!

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  7. What an amazing celebration and so well deserved. Avery's story is perfect and I am praying that God helps you through this time.

    Michael and Laura - you are every bit as inspiring as your beautiful daughter is. Thank you for sharing your lives with us. Because of your family, I know what SMA is and I can try to make a difference.

    Thank you for that gift.
    Jenni Davis

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  8. I am so sorry for your loss. Avery has been an inspiration to me, and many others. I am devastated to hear that she lost her battle with SMA.

    My heart goes out to your family at this time.

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  9. Shoulda missed Avery is so right! Your story rings through me when ever I think of my children and how blessed every parent is just to hold and kiss you for just one minute. How precious your life was and god provided the best mommy anf daddy suited for your needs. How blessed your family and you forever are....Thank you four bringing awareness to me and reminding me to hug a little longer

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  10. Avery, you are a beautiful inspiring angel. My family and I love you. Keep spreading your smile across the world <3

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  11. We love Avery. Do we need a campaign to get you on Ellen? I think you still need to go on to spread the word about SMA, Avery would want that, I bet.

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  12. What a beautiful, beautiful girl you are Avery - you are obviously so loved and cherished. Your Daddy was very brave to be able to get up and speak on your behalf - beautiful words and giving us all a bit of a giggle as well. I was not aware of SMA before, and now all the way down here in Australia I am. Have fun up there in Heaven sweetheart, and know you are still working your magic down here.

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  13. Averys life has inspired me to appreciate everyday that I get to spend wth my 6 month daughter. Her name happens to be Avery as well and we are going to celebrate each and everyday like it was our last in honor of your beautiful little Avery!
    Xoxo,
    Nicole, Scott, Avery Odell

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  14. Wow. I have no words. How amazingly inspiring you all are. I will be sure to help fulfill Avery's wish and spread the word about SMA.

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  15. Laura and Mike,
    I am very saddened to hear of Avery's passing. I learned of her bucket list the Saturday before she died. When I woke up Tuesday I did what I usually do if my 6 month old son is still sleeping, I checked my facebook on my phone. When I saw that post I started crying and haven't stopped since. I have cried myself to sleep quite a few nights because I could never imagine the pain you are going through. My heart aches for you. She IS a very special little girl(in fact we have the same middle name spelled the same too). I have never heard of SMA before Avery. I am glad I know now of SMA. I will encourage women who are thinking of becoming parents to get tested.
    Laura and Mike thank you for sharing Avery and her story to the world. Thank you for being brave and courageous and not just sitting back and waiting for the inevitable but for letting Avery live her life to the fullest. Not many people would have the strength that you and her family have. Avery will always be in my heart. Also because I am touched by Avery's legacy and the name Avery is such a beautiful name I have decided that If I am blessed to have a daughter after having 3 boys I will name her Avery. I hope you don't mind. I think it will be a great way for her legacy to continue for when my daughter asks who she was named after I will be able to tell her about Avery's life.

    My deepest condolences,
    Erica Lynn Trenton
    Taunton, Ma

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  16. I have been following your blog & find myself continually coming back to see that beautiful smile. Avery has touched my heart in so many ways. I can't begin to imagine the pain you feel, because my own daughter was born only 5 days before Avery & SMA stole the ability for Avery to do the things that so many of us take for granted. I've cried so many tears reading your story but I can't help but smile as I see the donations to Dr. Kaspar's Gene Therapy continue to grow in memory of Avery. Avery accomplished more in less then 6 months than a lot of us do in an entire lifetime...she has inspired the world!! Avery's short life was not in vain, it was a life full of love & strength.

    Avery...you are my hero!!

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  17. Bye Avery we love you! Can't wait for the day I can finally meet you!!! Until then will keep spreading the word about SMA!
    Love
    The Melvillles

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  18. So beautiful! Avery was a specail little girl, and still is. Her physical body may be gone but her memory lives on, forever. She will always be in my heart as well as others. She has changed my life and the way I see and live it. Avery, I love you & your family. We will reach your goal, so noone will ever have to go through this again.

    Also, I agree with the comment up there, I think your mommy & daddy still need to go on Ellen & share your story! Maybe they can dance with her =) I kno you will be there too!

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  19. What a beautiful celebration of a beautiful life. Like many others have shared, I too have been touched by little Avery. I am a better parent and cherish life just a bit more because of her story. Her bravery and inspiration is beyond words. Her short life will never be forgotten and I pray that a cure will be found for SMA. What amazing parents you are and I am so happy that you shared your Avery with the world. We love you Avery girl.

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  20. Babygirl, I prayed for god's miracle for you. You will be forever imprinted in my heart. That brief connection the day we drew your blood for that test has never left me. Go play with the angels with wings that will never match your inner and outter beauty. I pray for daily strength for your mommy and daddy, and continue to keep your friends in my prayers too. God just valued you too highly to have you here.

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  21. That is the most beautiful eulogy I have ever read. Avery has without a doubt changed my life. I have already told everyone I know about her, emailing, Facebooking, tweeting and blogging about her and SMA. She has already changed the world and she will continue changing it. One day when they find a cure for SMA, I know everyone will think of Avery and smile in honor of her. And you as her parents are truly inspirational as well. You too have changed the world. You are special people and incredible parents. I hope you know that the whole world is cheering for you and is behind you. Thank you thank you thank you for reminding everyone the beauty of life.

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  22. In the month that I've read about Avery, she has taught me more about living life than I dared to learn before. God bless you, Avery. Thank you for teaching a stranger how to appreciate each day.

    I agree with her, she deserves to be a big sister! A child couldn't ask for better parents than the two of you. Any child would be blessed to be called yours.

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  23. Avery's story will never end.

    We remember her, we miss her, we love her.

    We support the cause: A Cure For SMA.

    Thank you Avery, for teaching us how to really live.

    (I hope you get to be a big sister one day. A finer big sister no one could hope to have)

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  24. My thoughts are with you, Mike & Laura. While my heart is heavy, I know you are sharing a gift with the world. Avery's smile & a truly inspiring story of a family with the ability to thrive in spite of SMA.

    Avery is an angel who has changed the lives of millions.

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  25. Dearest Avery, Like your Daddy, We too cry tears of more than sorrow. We cry tears of complete and utter amazement at how brightly your star shined during it's short flight through our atmosphere. You are very blessed that God chose your Mommy and Daddy to guide you during your brief visit here and they are so very blessed for having that honor. Your family's story is one of love in its truest and purest form and one that we will tell our baby girl. You have left a lasting mark on many, many hearts and have united people from many different parts of this world. Your legacy will live on in those hearts as we repeat your story and continue to enlist others to help your fellow little SMA angels. We pray you one day look down from Heaven to see your Mommy and Daddy telling your story to your little brother or sister in a world where SMA does not exist. Thank you for reminding us to keep living. - The Mugridges

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    1. Sweet Avery! Although your arms had no muscle, they tightly hugged the hearts of millions and have shown a stronger strength than even wrestling champions. You are an inspiration for all and your parents loved you like crazy. I hope one day I will be an awesome parent like the ones God gave you, and have a baby that shines as bright as you.

      Thank you, Avery's parents, for sharing precious Avery. You have made me laugh and made me cry. You guys are an inspiration. Thank you. Because of your diligence, you have educated and impacted my life as well as millions. Please keep posting, I, one of Avery's SMAns, LOVE it. Thank you, thank you, thank you.

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  26. Michael and Laura, you are amazing people. Thank you for sharing beautiful Avery with us. She holds a special place in my heart and I will never forget her. She has taught me about SMA, but also to enjoy each moment I have with my little girl. I wish you strength and future happiness. Just know that everyone who read Avery's blog learned to love her and will miss her. I know I do. Many flags are waving for you in the sky dear Avery. Keep smiling angel:)

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  27. Our daughter just lost her fight on May 6. And, just like Avery, was smiling just moments before. It was a huge shock, but because of your story we knew it could happen that way. Avery has a new friend in heaven. I am so excited for her to have the use of her legs and to be eating everything she wants with taste! I'm so sorry for your loss and am now able to truly understand what you are going through. We were blessed with beautiful daughters who were here for a purpose. They are going to change the world with the donations they are receiving and find a cure. You made a huge difference in getting so much attention for this cause. Simply amazing :)

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  28. Avery taught the world the true meaning of love, she stole our hearts and we will never be the same. I like others was addicted to her smile, she is a very brave and young hero! I have 2 girls and was so in love with Avery I have cried for days! I just want you to know your tiny daughter brought light into a world of darkness for many. She brought hope where none existed, and will continue too! I will always think of her when I think of BRavery! We love you baby girl and your amazing Mommy and Daddy! Hope you get to be a big sis! You'll be one heck of a little gaurdian angel! :)

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  29. I will never forget this baby. In such a short time the impact she made is incredible. Michael and Laura, you both were amazing parents. As others have stated, Avery was blessed to have you as parents. And you were blessed to have this beautiful and amazing little girl in your lives. xo

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  30. SMA is such a horrible devastating disease. I first learned of it from Bill and Victoria Strong, co-founders of the Gwendolyn Strong Foundation which works hard to support research and education. I share all the FB posts they make on my FB and hopefully my friends and family share and pass the information on.

    My heart breaks for you in your loss of your beauitful Avery. I can only imagine the pain you feel, but am sure Avery is smiling knowing you will carry SMA out into the world so that everyone knows what it is and what it robbed you of. You will make a difference in people's lives.

    Peace be with you.

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  31. Thank YOU Avery for your smile and bravery! You'll be in my heart forever and i'll never forget you and your sweet smile..
    I've been crying since you passed and everytime i read a new post i cry little more..i just wish i could do more to help, but maybe if all of us do even a little bit to raise awareness about SMA, someday hopefully soon they find a cure and you, Avery, has accomplished your mission.
    I still hope to hear updates from mommy and daddy. And i too hope you'll be big sister!
    For mommy and daddy; you are so brave to share Avery's life with all of us, now you have the most beautiful and amazing angel lookin down for you. And she'll be waiting for you up in heaven and you'll be all together again ( she knows it takes long time but she waits patiencely)
    Avery; please take care of mommy and daddy and little sister, give them comfort by your presence.. you're missed and loved by so many. I love you and miss you, and i'll cherish your memory and that i can know you.
    Smile for us little angel!
    see you later Avery!!

    Kisses from finland

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  32. Thank you for touching our hearts Avery, you are God's precious angel now and you will never be forgotten. May you rest in peace and continue to help others in need. You are loved and will be missed. Goodnight sweet angel.

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  33. I cry tears of sadness and tears of joy. Tears of sadness for a beautiful angel leaving this physical world too soon, and for the hurt both of you are going through. I cannot imagine the loss of a child. I cry tears of joy to have gotten to know Avery's beautiful smile and life, and to have had the privilage of seeing life through her eyes. Avery has been such an inspiration to not only myself, but to my children especially my oldest who is 8, and to millions around the world.

    The eulogy was absolutely beautiful, and was just perfect for the princess Avery was. Thank you Mike and Laura for sharing your daughter with me (and the world), for informing and educating me about SMA, and to be able to continue to fight this fight that Avery has brought to light.

    Avery, thank you for sharing your life with us. I feel like I know you personally. Thank you for the love and inspiration, and for the reminder not to take anything for granted. How blessed we are. I have held each one of my children tighter since I 'met' you, and since you went home to Heaven I count each blessing day and night and am reminded to cherish every moment. You will be loved and never forgotten, and your parents will be loved as well. I know that you are smiling down from Heaven right now, and that you are playing and enjoying being back home with our Heavenly Father. I look forward to meeting you one day, and I know that your parents are looking for the day to see you and hold you again! Please know that we will continue to fight for a cure for SMA, and you bet it will be Shoulda Missed Avery! Love you baby girl and if you can tell my grandma Valetta that I love her and miss her and give her a kiss for me, that would be awesome! We love you----The Van Grolls

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  34. Avery is so inspiring and so precious! Are y'all planning on a public memorial? For those of us in Houston that would like to pay our respects? If not will you please consider it?

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  35. Avery, I did not know about SMA until I started reading your blogs a few weeks ago. You're truly an inspirational little girl and you're very lucky to have parents who love you so much. Please watch over and take good care of them.
    I know this is coming from a complete stranger on the internet but you and your parents are my heroes.

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  36. I thank you so much and much your words. Just now Avery are playing with Nina my little baby dead the last september when she was 5 months old. Avery and Nina has in her eyes that especially light that has change our lifes for ever. I send you all my love and my gratitud for bringing me back again the power of SMA childrens. I lost the course some days ago, yesterday was her birthday and today Avery has restored my smile that I said goodbye to my little miracle Nina. Nina care for her, and they always look after us together. Surely now Nina and Avery are smiling and waiting to see who will be the first big sister. Please do not lose the direction they marked us. People like you every day helps us to remember that without a doubt, what we have experienced has been worth it.

    Thousand of kisses fron Spain.Nina´s mum.

    ...sorry for my bad english...

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  37. Avery, Mike and Laura, you are in my thoughts everyday!! I am getting those wristbands made in honor of Avery and will be printing out a little pamphlet that tells Avery's story and what SMA is. The proceeds I get will go to help Dr. Kaspar's gene therapy through Sophia's Cure...100% of them! Thank you for giving me permission to do it. It's an honor to help and be a part of Avery's story! My heart still aches for your little girl, but the overwhelming kindness and donations I have seen in her name has filled me with inspiration! Avery has made such a difference, and will forever continue to do so. She definitely has in my life! God bless you, Mike and Laura...you have every right to be proud of Avery. I am proud of her too, and proud of YOU for your courage and strength throughout all of this. You are amazing parents, and I hope someday, our paths may cross. If not, then I am just as blessed for knowing you through Avery's blog. I will do what I can to spread the word here in Pennsylvania. My husband is a reporter, so I will have him do a story once I get those wristbands in and begin to fundraise. Love you, Mike and Laura!! Take care and God bless!

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    1. Melissa,
      Will you please keep us updated about wrist bands that we can purchase? I would love to buy them so I can continue to share Avery's story with strangers.
      Ashley

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  38. I so admire the strength you and Laura have... I pray my husband and I can be half the parents you were and still are to Avery. I stand in absolute awe at your poise. Thank you for sharing Avery with all of us and letting us love her. I tell my 3 month old daughter, Faye, about Avery every day and I let her know each time you update your blog. We will continue to fight for a cure for SMA and tell precious Avery's story. :)

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  39. Again...thank you so much for sharing your beautiful daughter with us. You are inspiring to us all...we will all strive to be better parents and just overall better people because of the strength and love you have shown. To Miss Avery...you have a piece of my heart. Know that all of us who have been touched by your story will live the BEST life possible for you. Thank you for making me remember to LIVE and to focus on the BIG stuff.

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  40. Avery, I love you, I miss you!! May you dance each day on the soft clouds and wrap your arms tight around your guardians! Never stop smiling. I keep you in my heart always and forever.

    Mike and Laura, thank you for sharing your beautiful daughter's life with us. The love in your family is so pure, so inspirational. I am blessed to have gotten to know Avery through you. A day hasn't gone by without me thinking of your little Skuttlebutt...her smile, bright blue eyes, her beautiful life. My heart and life is forever changed.

    The owner of the company I work for...his nephew attended Sat. You and him were neighbors in college. When I heard, my heart smiled. I felt even closer to Avery knowing someone I knew was there celebrating her life.

    We love you, Canahuati family.

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  41. Avery has transformed my mind, my perspective, my vision of life and my dreams - oh yes she has! I will continue to educate people on SMA and speak of Avery. She will always be with us!

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  42. Sigh.

    Unbelievable, really. All of it.

    May you be blessed in your loving memories and the prayers of family, friends and strangers - all of whom Avery's life has touched in the most profound way.

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  43. I hope so much that you and your wife can make Avery a big sister some day. Whether or not you choose to go through IVF, I truly believe that you both were destined to have a big family and you were destined to be Avery's parents. I hope her future siblings know about her and the fight you have all pioneered against SMA. It's very obvious that you are both terrific parents- and the whole world knows that you will do any and everything for your children. I hope that your future kids never get anything more than bumps and bruises, because you deserve it. I only wish that Avery could be there with you through the rest of your lives. I'm so sorry that she won't. Love eachother, let yourselves smell her clothes and sit in her room. Play with her toys and sleep with one or two if you need to. I hope that the pain you both feel now can be turned into joy soon. I hope you can have more babies!! Know Avery's fans out in the world want the best for you both.

    Respectfully,

    Jennifer O'Dell

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  44. Mike & laura,
    I again what to thank you for sharing Avery with us. She touch my heart in such a short period of time. I was heartbroken to hear of her passing, and still cry a little everytime I come to this page. While I wasn't able to make it to her service on Saturday, I definitely kept her in my heart & prayers. Once we get a bit of extra money I will definitely be donating in her honor, if possible to both charities. I hope she can get her last wishes, especially that of being a big sister. I know she will be watching down from heaven.
    Many blessing for you!
    Liz

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    1. I have been following your story for about a month now and I just want to thank you. My brother passed away from SMA 21 years ago and we could not spread the word near as much as you did. I just want to tell you that I hope as much as Avery that you have another child. My parents were scared to death to have another child. They tried for years to have my brother and then they lost him, but ten months after my brothers passing I arrived! I am now a happy, healthy 21 year old girl and I am studying special education so hopefully I can teach children that have muscular dystrophy and make a difference. And the greatest part of all is I have the best guardian angel brother that a girl could ever ask for. I wish you guys the best and I know Avery is proud of how great of parents you are.

      Keep spreading the word,
      Katie

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  45. You have been wonderful parents to a wonderful little girl. Best of wishes for your future plans and for your family and whatever comes next. Maybe one day Avery will have a sibling that will be just as loved as she is. I'm glad that your story is out there because more wonderful people like your family deserve to be recognized and remembered. Thank you for sharing your story.

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  46. I'm crying so much at the moment, Avery has touched my life and the lives of many people I know here in Ireland. Avery is in one word: amazing and as her parents you are too. Keep being amazing for Avery. Lots of love xx

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  47. this is so awesome. thank you for sharing Avery with the world. i hope that her bucket list continues to get done, and that her last item of being a big sister is fulfilled. she is incredible, and so are you guys.

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  48. Mike & Laura-
    You have such a beautiful daughter and I have LOVED sharing her story and spreading awareness of SMA often! I hope you know what a difference in the world your daughter Avery and you both have made!
    Thanks for being you and helping Avery live to the fullest, inspiring us all!
    Kristen

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  49. Wow what a inspriation you guys and Avery has been to me. I had never heard of this before following this page. What a very brave special family you are.

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  50. Avery has been in my thoughts for a while now and she has touched me so much. I have a daughter named Kennedy almost exactly one month younger than her with big blue eyes just like Avery's. Avery's story has brought me so much perspective on how to cherish every moment with my baby girl and LIVE life. I will be telling Avery's story and definitely get the SMA test when we are ready to give Kennedy a brother or sister. What an amazing impact this beautiful girl has given the world in such a short amount of time. May God bless you, Avery, as you watch over us.

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  51. Mike and Laura,
    I wish I could hug the both of you right now. I only 'knew' Avery for 3 days before her passing, and I cried when I read the news. I know that she changed my life, and she changed it for the better. I am praying for you, and I know that Avery is still guiding all of us. What a powerful little girl.
    I am keeping the fight against SMA on my fb every chance I get, and I know that together, we can beat this! SMA is going to wish it missed Avery!
    God Bless
    Jenn

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  52. Mike and Laura,

    I can not thank you enough for sharing Avery's story with the world. I began reading your blog just days after Avery passed. I don't know if it because I am a fellow Houstonian, because I also have a little girl (9 month old, Cambria), or just because Mike is that good of a writer, but I feel very connected to y'all. I am not an emotional person by any means but I have literally cried every day since reading Avery's story. Avery has not only touched my life personally, she has taught me how important every moment in life is. Thank you Avery, for teaching us all how to live and love to the fullest through your great example.

    Avery, your parents are amazing! I look up to them so much. They are truly inspirational. I wish there was something I could do to repay you for all that I feel you have given us. Donating the few dollars I can just does not seem like enough. I pray daily for y'all. I tell every one I can about Avery and I share every update on my page. But I feel so small in such a big world.

    I am still trying to help you accomplish every thing on your bucket list that you can. I have recently contacted the principal at the high school I think you would have attended in hopes that they will grant you your honorary diploma. And I very much hope your Mommy and Daddy will make you a big sister one day very soon. They are such great parents and deserve all the happiness in the world. Please continue to update us on all of the great things I know Avery will be sending you from heaven.

    Hugs, smiles and love.
    Ashley, Tripp and Cambria

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  53. Im so proud of you Avery, You have shown me how life should be lived. Everyday i have thought of you, I have cried tears of sadness because your no longer here lighting the world with your big blue eyes and a huge smile, but I have also cried tears of joy for what you, your mom and dad have accomplished. You guys raised unbelievable awareness and made a couple million friends to go with it. You are my HERO. Your story will forever live on through me. Were gonna make sure SMA shoulda missed Avery!! Im gonna honor your courage and bravery in any way i can. Cant Wait to meet you someday up there. RIP Avery we really miss and love you!!!

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  54. Sweet baby, I thought of you today. You've waltzed into my heart and you make me take notice of things I never did before. Thank you so much for that, Avery. I wrote about our first jam session - just yours and mine. http://tatetwo.blogspot.com/2012/05/jam-session-with-avery.html

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  55. Avery will always be missed like crazy, especially by us parents of fellow sufferers. The world now sees Avery as our child. Avery is already a legend in our community, and forever will be to the world. Thank you so much not only for the continuous updates, but for giving a baby the chance to see little bits of the world in her all-too-brief time here.

    Love always,
    The Scott family

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  56. Dearest Avery,
    You are such a loved little girl as are your parents. I pray for you all daily, and I will now add your latest wish for a little brother or sister--whenever and however it happens--to my prayers. The fight against SMA is over yet, little one, but you have been a formidable adversary, and it will be beaten!

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  57. Dearest Angel Avery,
    Your story has touched my heart. Thank you for opening my eyes to SMA. I know how much your family misses you. I dedicated my blog post to you. Thank you for having such a profound impact on my life. May you always dance among the clouds little one.

    http://www.youmeandbabyg.com/2012/05/little-avery-bucket-list.html

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  58. Avery you are an amazing little girl who has definitely changed this person's life. Because of you, I look at the world through different eyes. Because of you I have a passion I did not have before to do something for others and not just myself. You have shown the WORLD how to live life, how to live a selfless life, and how a simple smile holds the power to change the world. Your mom and dad should definitely be the proudest parents in the world. Their little girl has literally changed the world! God bless your family Avery. I know you're going to take good care of them.

    Sincerely,
    Robin Martin

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  59. Avery is sorely missed. I was looking forward to hearing about all of her adventures. I come here daily to see her pics and precious smile and I cry a little each time. Thank you again for being such an inspiration and for sharing Avery's story. HUGS

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  60. I saw your brave story today in a local channel. I'm very proud of you and your daddy and mommy. Love from Costa Rica, Laura.

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  61. R.I.P. to this beautiful baby girl. I have been following your blog for awhile now, and it was a real shock for me to see that Avery passed. I am SO terribly sorry for your loss, and have shared your story with many. I truly feel for your family at this sad time, and my thoughts and paryers are with you.

    You have inspired many, and your daughters name will live on in all of our hearts.

    Love always,
    Leigh

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  62. Sending love and prayers to your family. Although you much be in so much pain it is all worth it in the sense that you enjoyed her life so much and shared so much with the rest of us. You are wonderful, strong parents and I truely hope that Avery gets to cross being a big sister off of her bucket list.
    Love from Michigan -
    The Howell Family (2 more little girl friends of Avery)

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  63. Sounds like little avery already has a song. Would she like two? I'd love to write a song for or with you. One of the things that I love to do in concert is write a song live with the audience. If you wanted, I could write a song based on Avery's blogs, or on the comments after the blogs, or about the cure we're all working towards. Tell me how I can help. www.laurawhidden.com fb; "laurawhidden"

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  64. I am a songwriter, I would be honored to be involved. I could write a song from avery's perspective, based on her blogs, or I could write one from the blog-community's perspective based on their comments, or I would be glad to interview anyone you want and write a song about the search for a cure. How can I serve you during this time?
    laura
    www.laurawhidden.com
    fb: laurawhidden
    laurawhidden on itunes

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  65. Just thinking about you today Avery. I love re-reading all of your adventures. I continue to spread your message of SMA awareness to everyone i talk to. You are such an inspiration in my life. I find myself just running out of the office at the end of the day to go home and hug my two kiddos. I think they think that mommy is a bit crazy:) But i don't care. i plan to never take one second i have with them for granted ever again.

    Hugs & Kisses,
    Polly, Reagan & Max

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  66. I just wanted to update y'all. I have been spreading the word of SMA and Avery's story with every outlet I can. I tell everyone I know about it, I share every post you make on facebook, retweet on twitter and just recently created a pin on pinterest trying to help. I have already gotten 3 likes and 2 repins and I just made it yesterday :) I used the picture of Mike and Avery in the hospital bed after her g-tube procedure. I love that they have their arms raised in victory. I know every little bit helps, so I'm trying :)

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    1. HAPPY 6 MONTH BIRTHDAY AVERY!!!!!!!!! I miss hearing about your adventures. I found your blog from the very first day you posted and you were the best part of my day for 3 weeks. I hope you're enjoying your new life in heaven, although we are sad down here. I think of you often and I will do my best to do what you're daddy has asked of me; to make the best of my life in your memory. We will continue to kick some SMA butt! (Whatever that means)as Avery would say. :)

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  67. Thank you, Mike n Laura! You have done more for SMA than anyone else in the history of this disease!! I have been so moved by this there are no words. As strange as this sounds, you have helped me heal from losing my Bella to SMA more than all the shrinks in the world! I no longer feel that Bella was just another forgotten face in this terrible battle. Thru Avery you have given all of us parents that have lost a child to SMA a face. Bella n Avery can play together now and talk about how silly we were with the ridiculous bows (i did it to her too!!). THANK YOU FROM THE BOTTOM OF MY HEART N BELLAS MEMORY WILL LIVE ON THRU AVERY'S COURAGE!!!!!! And just a note of encouragement, my son Jackson was born 2/23/12....healthy without SMA....

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  68. HAPPY 6 MONTH BIRTHDAY AVERY!!!!!!!!!!!! I miss hearing about your adventures and think of you everyday. Hope you're enjoying your new life in heaven.You are your parents are such an inspiration.I found your blog the very first day you posted and you were a very happy part of my day for 3 weeks. Keep smiling baby girl. We will keep trying to kick some SMA butt! (Whatever that means) As Avery would say. :)

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  69. HAPPY 6 MONTH BIRTHDAY AVERY!!!!!!!!!! I miss hearing about your next adventure.I found your blog the very first day you posted and you were the best part of my day for 3 weeks. I think of you everyday. Keep smiling baby girl. I hope you're enjoying your new life in heaven, even though we are feeling emptiness down here. We will continue to try to kick some SMA butt! (Whatever that means) as Avery would say. :)

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  70. Happy 6 Month Birthday Avery!! Sending 6 hugs & kisses your way with an extra one for your mom & dad!! It's a beautiful day here, just perfect for January & I to go out & have a picnic for your birthday. January just turned 6 months on Sunday but her & I decided to hold off her picnic so we could celebrate with you:)

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  71. HAPPY 6 MONTH BIRTHDAY AVERY!!!!!!!!!!!! I miss hearing about your newest adventures. I found your blog the very first day you posted and you were the best part of day for 3 weeks. I hope you're enjoying your new life in heaven, even though we are feeling emptiness down here. Keep smiling baby girl, as I know you are. I will continue to pray for you and your parents. We will continue to kick some SMA butt! (Whatever that means) as Avery would say. :)

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  72. Hello Avery,
    I just wanted to say hello and tell you that I still think of you and your family often. You're an inspiration to so many. Teaching people to live everyday to their fullest is so incredible. Your family sounds soo amazing, I know that they are grieving now, and I know that they will always hold you in their heart. Know that you have educated so many people the world over in SMA.
    Lots of love to you
    Cxx

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  73. Mike & Laura,
    Wow...I'm just in awe and amazed by your courage and strength! Mike, I watched you go through 2 long ,painful, tough journeys with your father then your mother, which was hard for me and can only imagine how hard it was for you, Jen, and Kristy. I love all of you and am honored to call you my friends/cousins. We have so many wonderful memories together and unfortunantly tragities as well. I struggle with how much one beautiful family can have to go through, but am quickly reminded that you all can take what should be the worst moment and turn it into an inspiration to all. I am so proud of you for Insure the Cure and now the amazing awareness you developed through your beautiful daughter for SMA. Keep your head up and your faith strong and know we all love you and your family.

    With Love Always and Forever,
    Kathryn Tennyson-Edmonds

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  74. HAPPY 6 MONTH BIRTHDAY beautfil girl!! I see your smiles everyday :) We love and miss you!!

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  75. Happy 6 month birthday Avery. Keep looking down on all of us especially your mother, father and all the lil ones who have SMA. I know you are at peace but I still wish you were with your parents.
    R.I.P. Avery Angel

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  76. Happy 1/2 Birthday Sweet Avery! I am sure you are enjoying your time in heaven with your Uncle Bryant, Nana Carolyn, Papa George, and all your great Grandparents. Don't forget that Sunday is Mother's Day... i'm sure you'll find some special way to remind your momma how special she is and how much you love her:)

    Love,
    Polly, Reagan & Max

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  77. Your story is completely inspiring! I am so sorry for your loss but you have changed the lives of millions! My almost 2 year old son and I are making his bucket list and will definitely be doing things not only for him but also for Avery! Sending lots of love from Tucson!

    Leslie

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  78. Little Avery, We all loved you. I read all of the stories about your beautiful life! You are a beautiful baby. God knitted you together in your mothers womb and there you are, with your father. Even though the world might be very different without your beautiful and loving family, you are with your real father. It might be sad, but the Lord giveth and the Lord taketh away. You were a beautiful baby.
    Sincerely,
    Sarah

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  79. Thank you Avery, for being part of this world and sharing your couragous story!!!, and Happy 6 month Birthday!!!.Your story really moved me and I'm glad I was able to read it, I cried tears of joy, saddness,Your a beautiful little Angel you touched my heart and millions of others around the world!!!, Thank you Avery for that gift..I hope to help keep your dream alive of fightning this terrible disease SMA, by sharing spreading the word and donating and any other means..To Mom and Dad your daughter's courage and your own courage is truly amazing and a gift from God, cause you choose to let Avery live to the fulliest in short time and that is really inspiring, words can't describe how I feel about you guys and of course little Avery..God Bless you Both and you you as well Avery..I will never forget you and all of you will be in my prayers, my thoughts and heart..Chris Poulin Kelowna BC, Canada

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  80. Avery, you are very missed and will always be remembered. Laura, I am sure that this was not the Mother's Day you had expected or hoped for, but I hope you felt Avery with you today. That you are Avery's mother - and the very best mother she could have ever hoped for - is something that nothing can change and no one can take from you. You, your husband and all of Avery's family are in my thoughts and prayers each day, and even more so today.

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  81. Wow just wow. I cant stop reading this without crying. Even though I know your little angel is in a better place, it still saddens me that such a beautiful innocent bundle of happiness like Avery is gone. You guys are by far the best parents in the world. I laughed, I cried, I truly felt like I was seeing Avery's life through her eyes and it was amazing.Just knowing that she had amazing parents like you that did everything and anything to make Avery happy is just too wonderul for words to describe.

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  82. Hello ! Just some words to say thank you ! Avery Lynn is in my mind for ever...Now AVERY IS AN ANGEL, SHE CAN FLY ALL OVER THE WORLD ! May God bless her Mom, Dad, Family and all Avery's friends... SOLI DEO GLORIA !

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  83. I just found your blog when I was reading through the comments on Alice's Bucket List (an amazing girl celebrating her life whilst fighting Bone Marrow Cancer).

    The tears are just streaming down my cheeks.
    It is sad, but so amazing that you as a family stood together through this unimaginable difficult time and made the most of each and every moment, because it is precious.

    I also hope that Avery's wish to become a big sister will come true because I agree with some of the other people here that any child would be blessed to have you as a family.

    Avery your beautiful smile and darling eyes will remain forever.

    Luv,
    Z

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