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.
I was not the first, nor will I be the last. Think of us all and let's kick SMA's...BUTT (I don't know if daddy can still ground me but I don't want to take any chances).
So if you do nothing else, please share my message and help spread SMA awareness! You spreading my message could save future lives and also lead to further funding for a cure from other sources.
"Hope sees the invisible, feels the intangible and achieves the impossible." - anonymous
Hey everyone, I want to introduce you to my newest friend Lucy who was born July 9, 2009. Lucy gives my friends with SMA Type 1 hope for a longer life because she is just a few months shy of her 3rd birthday even though when she was only 3 months old she was given the same diagnosis my doctors gave me...Spinal Muscular Atrophy Type 1. Lucy's mommy was told, "fifty percent of babies born with SMA Type-1 were dead by their first birthday, and almost all (90%) died before their second." Then when Lucy's mommy asked her doctors if any children survived past their second birthday, the doctors just shook their head. Yet, here Lucy is, only a few months shy of her 3rd birthday, and though I never got to meet my friend, I'd have to agree with her mommy when she says, "Lucy's an incredibly happy toddler."
|Hey my daddy helped me too!|
|I hope your daddy is a better engineer than mine was!|
So how has my friend Lucy defied the odds thus far? She met a doctor conducting drug trials in Wisconsin whose name is Dr. Mary Schroth who is recognized as a national leader in the respiratory management of children with neuromuscular diseases. Lucy became part of the drug trial and though the experimental drugs did not preserve Lucy's physical strength, she continues to defy the odds that unfortunately I, along with many of my friends with SMA Type 1, was unable to defy.
So you see there are people out there like Dr. Schroth and Dr. Kaspar, who are still working to help Lucy and all of my friends live longer and stronger lives than "expected" with the intention of one day finding a cure for my friends with SMA. But as of this moment, the reality remains that there is currently not a cure for SMA and my friends need your help!
So here's what I hope for...
I hope through AWARENESS people will know what SMA is and they will get the carrier test. But I also hope people will remember to fund a cure for Lucy & all of my friends who still need your help.
IF YOU DO NOTHING ELSE, PLEASE SHARE MY STORY WITH EVERYONE YOU KNOW AND HAVE THEM DO THE SAME!!!
Please click here to donate to Dr. Kaspar's SMA Gene Therapy through Sophia's Cure which is a non-profit organization so all donations are tax deductible.
Remember ALL donations up to the first $500,000 will be matched by an anonymous donor and 100% of this money is being used to introduce Dr. Kaspar's treatments into my friends for the first time!
You can also click here to donate to FightSMA.org
FightSMA.org is a non-profit which raises awareness and funding for SMA Research. They too will help fund Dr. Kaspar and other clinical studies for a cure, however at this time there is no matching donor for donations made through FightSMA.org
Items I Can Scratch Off My Bucket List:
1. Share my friend Lucy's story
Whatever I bring to life through my mommy, my daddy, and through you.
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)! The more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will be a cure for my friends 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
Thank you again to everyone!
I pray to God, in the heavens that he gives the Medical Community the "wisdom", to find a cure for SMA, One child is TOO MANY!!!, My heart goes out to you Lucy and your family and to you as well Avery, and Mike and Laura, Chris Poulin Kelowna BC,Canada..I will share Lucy's story!!!!ReplyDelete
Lucy you are the most beautiful girl. You are strong and bright. I hope these doctors will continue to search for a cure, this is an awful thing to let happen to these cute kids.ReplyDelete
Yay! There's Lucy! Lucy is my daughter Alannah's Friend too! Alannah is 17 months old with SMA Type 1; she is a stronger Type 1. I read Alannah your blogs everyday! She LOVES them!ReplyDelete
Love Always Lindsey and Alannah
Thanks for sharing Lucy's story with us. You are bringing awareness to this disease and I know that your legacy will help others. Much love to you and your family!ReplyDelete
Thank you so much for sharing Lucy's story. She's absolutely adorable. Almost as cute as Avery:) I would be happy to share her story with all of my friends and family.ReplyDelete
Love from Houston,
Polly, Reagan & Max
So inspirational. Thank you for sharing other's stories and I will continue to share Avery's story as well.ReplyDelete
After seeing pictures of Avery and now Lucy, I hope SMA can someday stand for only one thing: Smiles Most Adorably!ReplyDelete
You are absolutely right!Delete
Thanks so much for sharing Lucy's story! Your family continues to be an inspiration to many and I've shared links to your blog on my blog at www.skylarmariejones.com. If you want to share another story, I would like to recommend the Gooden Family and their daughter Nora (also type 1 and almost 3.5 years old!) You can read their story at www.goodentree.com and also what they've done for the SMA community (SMAiPad and InsideSMA). I hope you are finding peace and comfort during your grieving process... I am here if you ever want to talk!ReplyDelete
Thank you for sharing Lucy in Avery's blog :) I would like to add that Lucy has had much help defying the odds - from a proper amino acid diet, daily breathing treatments to remove secretion buildup, and non-invasive ventilation support with her BiPAP (along with God's grace). If anyone would like more information on Lucy and her life with SMA, please visit www.lucyshopeforacure.blogspot.comReplyDelete
Thank you for sharing Lucy's story. SMA has not taken Lucy's smile away either.ReplyDelete
Let's all continue to share the stories, spread awareness , fund the research and find a cure so no child will ever lose their smile to SMA.
Never heard about SMA until you Avery. Now all I think about are all the little ones battling this horrible disease. I always come back for more updates.Thank you for sharing. Happy birthday Avery. I know your smiling from above.ReplyDelete
Avery, you are such a blessing to everyone and continue to encourage and inspire so many people. because of that, i think lots of people, including me, are kicking SMA's butt through you! you are still doing so much for all your past, present, and future friends.ReplyDelete
thanks for sharing your story and some of your friends' stories like Lucy and Estella. looking forward to reading more! i can't wait to meet you one day in heaven. love, taylor.
(oh, and i'm on your KICK SMA'S BUTT team just so ya know.)
Fly high little Avery! I've been reading your blog since about the 2nd day you started it, and you officially have soared into my heart!! I still check your blog almost everyday. I can tell you, I'm a very big SMAan!!!! Keep smiling Avery!!!! R.I.P ~Resting In Paradise~ReplyDelete
thank you for continuing to share the stories and information...keep fighting the good fight . Avery is still smiling, Mike and LauraReplyDelete
Thank you for continuing to share stories and information with us all .. Avery is still smiling, Mike and Laura..stay strong and keep on fighting the good fight !ReplyDelete
Lucy is so beautiful! God bless Lucy and her parents! Do they have a blog too?ReplyDelete
Lucy is a true inspiration to us all! Thank you for sharing her story. I have been educating and telling Avery's story. So proud and thankful for all of you!ReplyDelete
Hello. I have been following your amazing story since the beginning.ReplyDelete
My baby girl, Katherine Hannah, was born December 29th after five years of infertility. I would like to be tested to see if I am a carrier. I have BlueCross Blue Shield. I called them and they said that testing is not covered b/c my child does not have symptoms. I called my OB and he wants me to have a appt with a geneticist. I have a very high deductible and would like to just get tested as my daughter does not show signs and does not seem to run in my family. Do you know how I can get tested and the costs? My email addy is firstname.lastname@example.org
Thank you and I am praying for you!
I just sent an email to the show "The Doctors" and asked them to talk about SMA on their show. I hope they will. :) I mentioned Avery's story that inspired me so much.ReplyDelete
Love from CA.
Is there any place we can buy shirts, bracelets, or anything? So I can continue spread Avery's story and SMA awareness. Please email me any information.ReplyDelete
Maybe these sites could help you spread the word?
Avery you are very loved by people across the world. You'll never be able to comprehend what you've done for future babies and familys every where.
Thanks for sharing Lucy's story, Avery. Did you see that Delaware loves you too? http://www.legis.delaware.gov/LIS/LIS146.NSF/vwLegislation/SCR+41?OpendocumentReplyDelete
Your voice is still being heard, Avery, and people are taking notice. Thank you and thanks to your amazing mommy and daddy!
Avery can cross one more thing off of her bucket list. We wrote this song for her and are in the process of having it professionally arrange and recorded. I made this video so you could hear it right away.ReplyDelete
Oh geez! PLEASE PLEASE SEE THIS!!!ReplyDelete
Email from a news station here in Omaha Nebraska!!!
Friday, May 18, 2012 11:42 AMSarah Te Slaa [email@example.com]Actions
I just got your email. I'm very interested in the story and I will pass your information along to my newsroom managers. Would you and the mother be available next week? Are you getting the word out for her?
Heather FimbresThere is this five month old little girl named Avery who died on April 30th of this year trying to battle SMA. Her parents created this blog for her to spread awareness by telling her story from HER point of view and SOOOOO many people have fallen in love with10:32 AM
Sent ItemsFriday, May 18, 2012 10:32 AMHeather FimbresActions
There is this five month old little girl named Avery who died on April 30th of this year trying to battle SMA. Her parents created this blog for her to spread awareness by telling her story from HER point of view and SOOOOO many people have fallen in love with her! They are still trying to complete her bucket list even after she has passed. PLEASE help mothers become more aware of SMA testing which could prevent more deaths like Averys and struggle like her family.
There is another little girl named Lucy who is also mentioned in the blog who, with a experimental treatment, has beat the odds and is close to celebrating her 3rd birthday even though most children don't live past their 2nd birthday :( But every thing I've read says that there is a tremendous amount of HOPE for a cure!
Donations can be made to help find the cure at www.FightSMA.org and http://www.the200forsma.com/?page_id=10 and are TAX DEDUCTABLE!
Oh, also! Delaware is the FIRST STATE ever to make SMA testing a requirement. Do you have any idea of how we can make this happen in the good life of Nebraska????
PS! I listen to you and Heidi all the time on the Pat and Jt show :)
Plains Equipment Group
Elkhorn / Gretna
Thank you so much for sharing about Lucy! The impact that Avery has made continues to amaze me. I am glad that I have been able to help spread the word. The news stations in my area are being contacted by me to try to get segments on, and I discuss with everyone I meet about SMA. Awareness of this is so important. Mike and Laura, I continue to keep you in my prayers.ReplyDelete
I just wanted to send all Three of you my love and let you know that there are so many still thinking about you and Avery.ReplyDelete
Keep up your spirits Lucy! I hope one day you'll be able to jump on your own. And keep that amazing smile on. You are a beautiful warrior. Greetings from Dawn, Toronto, Canada.ReplyDelete
Michael and Laura,ReplyDelete
Since I first started reading your blog, you have been in my thoughts and prayers. I continue to pray for you every night and think about your beautiful Avery and what a gift she has been to everyone. My heart aches for your loss, but your love and will are bigger than SMA, so I know that you will kick its as . . ., uh, butt.