tag:blogger.com,1999:blog-9188356437468688857.post2391958760031072265..comments2024-02-02T08:45:57.743-08:00Comments on Avery's Bucket List: Facts about SMA & My WeekendAveryCanhttp://www.blogger.com/profile/04114885815609492616noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-9188356437468688857.post-24979133123970160552012-05-06T16:02:38.306-07:002012-05-06T16:02:38.306-07:00Hi, i´m from Mexico, untiled now i knew about your...Hi, i´m from Mexico, untiled now i knew about your beautiful story, i think that you are an example for all the families that in some moment tought that a disease will be the end of their lifes, but you taught to all the world, that we have to enjoy each minute of the life<br />I´m complete sure that Avery is so glad for had that family<br />Now, she is in heaven, she´s your angel family Canahuati<br />:) my best wishesErika Guzmánhttps://www.blogger.com/profile/13993261020707331291noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-46704271895123197912012-05-03T07:37:49.922-07:002012-05-03T07:37:49.922-07:00Dear Avery's parents, our deepest condolences....Dear Avery's parents, our deepest condolences. Avery was a brave girl. I'm sure she had brought so much joy in many people's life, and will continue to live in their hearts. I love her blog, and have shared it, hoping to bring her story and SMA to those I know so they can help tell her story too.<br /><br />Best regards,<br />BingrongBingronghttps://www.blogger.com/profile/13405548108126696707noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-27642797974077759012012-04-30T19:09:39.011-07:002012-04-30T19:09:39.011-07:00Paint graffiti.Paint graffiti.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-51922440544307292762012-04-29T07:10:24.455-07:002012-04-29T07:10:24.455-07:00Please take a look at the research trials for Type...Please take a look at the research trials for Type 1 SMA @ Children's Hospital Boston:<br /><br />http://www.childrenshospital.org/az/Site1061/mainpageS1061P5.html<br /><br />Best wishes for your beautiful familyMitchellhttps://www.blogger.com/profile/14954825317045394613noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-23846790561177604142012-04-27T14:33:54.001-07:002012-04-27T14:33:54.001-07:00Avery, you are an inspiration even to those who th...Avery, you are an inspiration even to those who think they are strong. Stay strong to inspire more.wanmomhttps://www.blogger.com/profile/12667102723669087935noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-53817213692925935662012-04-19T15:15:53.255-07:002012-04-19T15:15:53.255-07:00have you thought about sending this to Ellen to he...have you thought about sending this to Ellen to help to bring more awareness to Avery and SMA?Andie Jayehttps://www.blogger.com/profile/13598871164711470154noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-27061550085235903882012-04-18T18:54:03.216-07:002012-04-18T18:54:03.216-07:00hi, I am on a yahoo group called http://health.gro...hi, I am on a yahoo group called http://health.groups.yahoo.com/group/StemCellDR they are a group of American naturopaths and MDs doing stem cell transplants in a hospital facility in the Dominican Republic. What makes them unique is that they offer stem cells from the donor's own body (adipose which is fat tissue, or bone marrow, or both). I have been on that list for a while, and while not every single person gets gains, MOST DO, and some are fabulously life changing (Autism, severe, Parkinson's, more conditions I just don't know at the moment). I am not sure if this is appropriate for your daughter, but might be something to consider. They talk at the Yahoo group openly and you can just ask the question there. I think the cost is very reasonable, around 5,000 usd or so and does not employ umbilical or embryonic tissue whatsoever. Best of healing journey to you all.Liora (Lourie Collins) Pearlmanhttps://www.blogger.com/profile/00424846370700435547noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-1261903220311319992012-04-18T14:13:34.545-07:002012-04-18T14:13:34.545-07:00Avery,
You are a beautiful and amazing little gi...Avery, <br /> You are a beautiful and amazing little girl and are blessed with incredibly strong parents. As I sat here reading your story and crying my heart out for you and your family, my seven year-old daughter Aubrie came over and asked what was wrong. I showed her your blog and your list of wishes and explained your story. She would like to share some of her temporary tattoos with you (if your mommy and daddy say it is ok to rock one) so that you can cross getting a tattoo off of your list. Aubrie thinks you're pretty special too and she thinks it's pretty cool that both of you have names that mean "rules with elf wisdom."<br /> Take care little elf, keep smiling that precious little smile for your mommy and daddy. We will keep you in our thoughts and share your story.<br />Missie and AubrieMelissa Harthttps://www.blogger.com/profile/01340399058271539075noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-41784969456722514622012-04-18T13:00:19.951-07:002012-04-18T13:00:19.951-07:00Avery you are so beautiful! I have two beautiful l...Avery you are so beautiful! I have two beautiful little girls too, they are 2 and 4. Sometimes as a mommy I get so tired, worn out and frustrated. Thank you for reminding me how lucky I am and how everyday should be cherished and that children are the most amazing blessings. You looked like you were having fun in the bath!! You and your family will be in my prayers.khett63https://www.blogger.com/profile/02324842176225355409noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-20480867482013625402012-04-18T11:32:41.132-07:002012-04-18T11:32:41.132-07:00Your story is wonderful...I was born with SMA 41 y...Your story is wonderful...I was born with SMA 41 years ago as was my sister 36 years ago...my parents were told that we would not live past the age of 2. Do not always listen to them, its not up to the doctors. I have 3 children and a granddaughter now. You and your parents just keep hanging in there...it is a struggle but worth every bit.Slchildresshttps://www.blogger.com/profile/17123893015765156806noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-15160714065299564162012-04-18T09:41:08.519-07:002012-04-18T09:41:08.519-07:00It is beautiful what your doing with the blog and ...It is beautiful what your doing with the blog and bucket list. We lost our beautiful grandsome Jordan more than eight years ago to SMA and he is still missed everyday, He has three perfect beautiful brothers and that has helped but he is still missed. One one the most important times during Jordan's short time with us was when he got to be a normal baby, he was my son and his wifes first child and they felt like they got cheated so a physician at the hospital found a way to make his feeding more easy and less noticible and he has some time where he was just a baby it was beautiful, he did not have a lot of firsts, my wish was that he could have a lollypop, that never happened but he did smile alot! He loved the Wiggles. Keep doing what you are doing with your daughter enjoy her she is beautiful. Always celebrate her.Joanhttps://www.blogger.com/profile/13404217407251222687noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-64471747709336867712012-04-18T08:42:42.730-07:002012-04-18T08:42:42.730-07:00Avery I hope you know how much your parents love y...Avery I hope you know how much your parents love you. Even without knowing you, my heart hurts for you, I can not imagine how your parents feel. You are so lucky to have them in your life, if even for such a short time. <br /><br />You story is so inspirational (I bet you hear that a lot.) You go and live your life, for you, for your parents, and for all those people that do not live their lives to the fullest.<br /><br />And to you Avery's parents, thank you for doing all you are doing. Your baby girl is so blessed to have you, and from her pictures I can tell she knows it. From one parent to another, thank you for loving her so much.Claire Grinerhttps://www.blogger.com/profile/17494534941545191853noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-7521602630287610342012-04-18T08:39:30.939-07:002012-04-18T08:39:30.939-07:00I'm glad you had a wonderful time in the batht...I'm glad you had a wonderful time in the bathtub! I've been trying to get the word out about your blog through my blog, so hopefully some of my visitors have been coming to visit you!Shastahttps://www.blogger.com/profile/10169078457423930417noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-34493507202558127542012-04-18T08:34:54.491-07:002012-04-18T08:34:54.491-07:00What a beautiful girl. You guys are SO brave. I d...What a beautiful girl. You guys are SO brave. I don't know what else to say, but thank you for sharing. Thanks for sharing Avery and life and love and smiles and information. Mostly the love. Thank you. xoxo-DianaDianahttps://www.blogger.com/profile/08052233974213663477noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-8581282216154521422012-04-18T08:34:09.706-07:002012-04-18T08:34:09.706-07:00Hi, Avery! Can I suggest something for your bucket...Hi, Avery! Can I suggest something for your bucket list? How about a manicure (with frosting, not real nail polish, of course!)? That way you can enjoy the pretty nails before licking them off! I've never had my nails done, but if you're willing to do it, then I will submit to it too, hehe! Come to think of it, I'd rather have my nails done in frosting actually ...<br /><br />By the way, I shared your story on my newly-created Facebook. I don't have many friends yet, but maybe that will change in the next few months. I have complete faith that you will still be sharing your adventures when my friends list hits double digits!Tienhttps://www.blogger.com/profile/03512059642764279202noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-61526713481455172302012-04-18T08:28:40.084-07:002012-04-18T08:28:40.084-07:00Avery...you are a strong a very courageous beautif...Avery...you are a strong a very courageous beautiful little girl..you don't know me from that person walking down the street..and I'm sure your mom and dad have already spoke to you about talking to strangers..so I will keep this short..God's plans for you are nowhere near done yet..He has your life all planned out...He has blessed you and your parents with each other..keep up the good work on being an advocate for SMA..my heart goes out to you baby girl..I look forward to reading more of your adventures as you work on your bucket list.erikaz7https://www.blogger.com/profile/13056770978615306412noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-4036774356191643102012-04-18T08:28:37.523-07:002012-04-18T08:28:37.523-07:00I am not much of a blogger or follower of much but...I am not much of a blogger or follower of much but i came across this somehow and now i am so excited to read about your adventures and life!! i have a 5 month old as well born Oct 24 named Shae and i cant imagine what you are going through!!! I am going to put you all on our church prayer list!!! What a beautiful and amazing little girl!!!!!!Family ties bonded by friendshiphttps://www.blogger.com/profile/14327126483408236063noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-90906011525293916512012-04-18T07:55:31.156-07:002012-04-18T07:55:31.156-07:00I have just found your blog and I can't stop c...I have just found your blog and I can't stop crying or thinking about your beautiful little girl. I have a 9 month old daughter, so your story has really had an impact on me. I had briefly heard of SMA before, but never the different degrees of severity. After hearing your story I did my own research and now know far more than I ever would have about SMA. Please know that your efforts are succeeding!<br /><br />The strength that you and your family possess is astounding. I want so much to be able to provide a cure for Avery, and in that I feel helpless. I can only imagine how you feel. What you are doing for your daughter is nothing short than amazing. I hope you find comfort in the fact that your daughter doesn't feel the sadness or anger that you feel. Her life, although short, will be one of happiness, discovery, and wonder all thanks to you. That is what she'll know, and so few people leave this world with a life unmarred by sorrow. She will, and that is the gift you're giving her. <br /><br />Know that your daughter is loved by so many people, even those she's never met! I tell my daughter all the time that everyone loves her, how could they not? Avery is truly loved around the world, and as small as she is, she's already made a larger impact than most do their entire lives.KBhttps://www.blogger.com/profile/08989573862162796178noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-74016587271798641412012-04-18T07:32:51.977-07:002012-04-18T07:32:51.977-07:00This story has touched my heart! I also have a chi...This story has touched my heart! I also have a child who has SMA. Hers is type 2. We met our first SMA friend last month her name is Hailee she was diagnosed with type 1. I pray for a cure soon for our children. Thank you for sharing your story.SMA Mommyhttps://www.blogger.com/profile/16281587699717234190noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-28038507801423653132012-04-18T07:29:22.030-07:002012-04-18T07:29:22.030-07:00Hi there ! I saw your story on facebook. One of my...Hi there ! I saw your story on facebook. One of my fried has lost her child because of SMA Type 1. I know how hard it is to know that time with her is lmimited. A French Writer has told "when you can not add day to life, just add life to days ..."<br />I'm from Madagascar and can not do a lot, but be sure that you will be in my prayers like all those little babies that suffer of this horrible disease. lots of love to you and wonderfull Avery. Wish her great moments !Miahttps://www.blogger.com/profile/14532293327565683664noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-55920499768407596642012-04-18T07:23:08.352-07:002012-04-18T07:23:08.352-07:00I love what you are doing through Avery's blog...I love what you are doing through Avery's blog. What an amazing way to spread the word about SMA. I work in an NICU and my heart too has been touched by babies with SMA. Thanks for sharing and my heart is with you in Avery's journey of life :)<br />Christychristy gottohttps://www.blogger.com/profile/02953389296977254844noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-85204619666122971252012-04-18T07:05:57.355-07:002012-04-18T07:05:57.355-07:00Your story really hit home, I have a 4month old so...Your story really hit home, I have a 4month old son and couldn't even think of something like this happening to us and being as strong as your parents. God truly blessed you with your Mommy&Daddy and I'm amazed at their strength. You have been on my mind ever since I heard your story yesterday and cried my eyes out as I prayed for you last night. I don't know just how big a tea party you were thinking but our church here in Sealy is hosting a Mother/Daughter Teddy Bear Tea Party April 28 and would love to have you and your mommy as guest. Contact me if interested Jennifer_s84@Yahoo.com.jsolverahttps://www.blogger.com/profile/09350159883966971252noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-8696650893972863342012-04-18T05:32:49.913-07:002012-04-18T05:32:49.913-07:00I just read about this blog on Babycenter last nig...I just read about this blog on Babycenter last night and as I began to read more, I cried like a baby. Your Avery is beautiful! I have a 3 month old daughter and she is the light of my life... just as Avery is yours. I know I have never met you, but please know you are in my thoughts and prayers. You are amazing parents and I admire your strength and resilience. I cannot imagine having to go through what you are going through everyday. I pray that Avery's life is filled with more love and fun then she can handle and that you cherish each and every moment. <br />Little Avery- You are gorgeous and absolutely amazing! Your mommy and daddy are so lucky to have you :) I look forward to reading more about your bucket list and seeing more of your smiles!Peepers47https://www.blogger.com/profile/16431227174770656689noreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-78345221551968681302012-04-17T21:11:03.296-07:002012-04-17T21:11:03.296-07:00Tonight, I would just like to weep like a baby for...Tonight, I would just like to weep like a baby for you. I am so scared to get close to you but I find myself checking back on your blog to see what great adventures you have concorqued. Today I started coming down with flu or stomach flu symptoms, not really sure what it is but I feel really sick and bummed. I'm really afraid to pass it to my 2 and 4 year old boys so I'm sleeping on the couch downstairs. I would HATE for them to feel like this. But as I lay here and feel sorry for myself I come to your blog and see you in tv and realize how much worse things are for you and your family. You have the strongest parents I have ever met and the only stronger parent that I can think of is our God in heaven. I'm really happy that I have recently started seeing my facebook friends post about you and I will do my best to spread the word to people by mouth as well. But right now I will cry myself to sleep and pray that your days just keep getting better!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-9188356437468688857.post-76381987273434603512012-04-17T19:15:11.418-07:002012-04-17T19:15:11.418-07:00Hi Avery~ Precious and beautiful you are~
And trav...Hi Avery~ Precious and beautiful you are~<br />And traveled you are, for tonight I saw you and your lovely parent's on my TV, all the way from BC, Canada, where, I have tweeted your story for more to see.<br /><br />Sweet you are little one, as is my grand-baby who's name is also Avarie.I'll think of you dear one with every precious cuddle I give to my own little Avarie.And think of you with every little giggle, smile, and sneeze.<br />Blessed be~<br /><br />Dee-xo~Silentwhisper1https://www.blogger.com/profile/06298155592217052102noreply@blogger.com