Avery Lynn Cahahuati is a 6-month old child who died this past Monday from spinal muscular atrophy (SMA), an incurable genetic disease that kills more infants than other genetic disorders.
SMA attacks the neuromuscular system, particularly the respiratory system. Avery was diagnosed with SMA type 1 and not expected to survive to her 2nd birthday; type 0 is worse and usually occurs in fetuses. To learn more about this disease, check out fight SMA.
Avery of Bellaire, Texas, was featured on a blog created by her father, Michael. Her blog was a “bucket list” of experiences and included these items and more: Wake up smiling; have a bad hair day; get picked up by a fireman; talk to mommy and daddy; eat a cupcake and a blow pop.
The blog was a fund raiser for SMA gene therapy research through Sophie’s Cure, a non-profit organization, working to raise $1,000,000 to take the work of The SMA Gene Therapy program from Nationwide Children’s Hospital/Ohio State University out of the lab and into the SMA patient population. All donations are tax deductible.
We’re thankful for the health of our 5-1/2 year old grandson and 9-month old granddaughter. Reading Avery’s story was sad; her legacy continues by funding research to help future generations of children and their families avoid the heartbreak of losing a child far too soon.
9 comments:
Aw. Makes you thankful for healthy kids.
Very sad My heart goes out to all those who have ill children. I am Thankful that our children are healthy.
There are so many horrible diseases and conditions that target young children. It's terrifying and so, so sad! A healthy child is a wonderful blessing that we can be grateful for every single day of their lives!
I saw the mother and daddy on TV with the baby doing the bucket list, heart breaking story. your babies are beautiful.
Such a sad story. It does put things into perspective doesn't it.
Such a sad tale, I worship parents who survive this ordeal
How very sad. I am so sorry for this sweet little baby's family, and thank God for all the healthy babies out there. Your grandchildren are truly precious.
Heartbreaking. A healthy baby is such a blessing and it's all too easy to take it for granted. I hadn't heard of this disease before. I'll check out your link.
Your Grands are precious. We love ours with all our hearts too!
It's hard to see your children suffer....both of our childen who have faced multiple surgeries and life altering changes are still with us, for which we are so thankful.
Thanks for sharing about this family!
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