Coming Together....

    Sadly, Avery from 'Avery's Bucket List' passed away this week at 5 months old. Our prayers are with her family, although we don't know exactly how they are feeling, we have imagined the possibility many times. Like I said in my previous post, it makes me sad that doctors do not give proper information to families and that so little is known about SMA. All of the SMA parents have been working for years to change this. But, because of the sweet way this little girl made her mark in the world, SMA is now getting some attention. Her blog captured the attention of many and they began to learn about SMA. The SMA community reached out to them and her parents began to learn more about SMA as well. They willingly changed some facts on their site and gave sites to donate to the actual Gene Replacement Therapy program. Her parents had planned to feature some stories of other SMA children. Everyone was beginning to work together. But, Avery unfortunately passed away suddenly due to SMA complications. This sweet girl's life was too short but it wasn't in vain. I watched the counter on her site today and it just kept ticking. Tick, Tick, Tick. I watched as another new person logged on to see the story, and another, and another. I cried, not only for the loss of another SMA child, but for the hope that she has brought to my daughter and all of her SMA friends. People now know about SMA and want to help. Everyone is coming together with one thing in mind, fight to cure SMA. The familiy has asked that donations be made to Sophia's Cure Foundation to fund the Phase 1 human clinical trials of the Gene Replacement Therapy program. An anonymous donor inspired by the story, who also donated $400,000 last year, committed to match any donations made to Sophia's Cure in Avery's name, up to $500,000!!! As of this afternoon, about $127,000 had been raised, since yesterday!! This will be matched!! My heart is so full of hope that it could burst! A program that shows promise for our children, and the funding to make sure it happens! Avery and all of our children were given to us for a purpose. They all touch so many people's hearts. Thank God that Avery was able to break through to the masses with her sweet story. Say a prayer tonight for her family and please donate to Sophia's Cure in her name. Thank you sweet angel...

http://www.sophiascure.org/donate

http://www.sophiascure.org/blog/gene-therapys-major-anonymous-donor-touched-by-averys-bucket-list

http://averycan.blogspot.com/