For the last three weeks, SMA has finally hit the public's minds. Because of a little girl named Avery, everyone is finally hearing the words "Spinal Muscular Atrophy." Avery's mom and dad created a blog named "Avery's Bucket List," and the blog took on the world. Unfortunately, Avery died this past Sunday from complications of SMA. Avery's life has not been in vain, however. Because of her, Dr. Brian Kaspar's Gene Therapy for SMA is finally getting the boost it has needed financially, and we are thisclose to having the funds to complete it. Avery's parents have asked that people donate to Sophia's Cure Foundation to honor their daughter's life. And people are doing it!!!! Right now, over $111,000 has been donated since Monday, AND an amazing, wonderful anonymous donor has offered to match whatever is raised in Avery's name, up to $500,000.00 !!!!! If we can do this, we will have raised all that we need for the Gene Therapy Clinical Trials, which means WE CAN SAVE CHARLESTON and all of the other children with SMA!!!!!
Today I keep thinking of all the fundraising we've done, all the emails that have been sent, phone calls made, letters written, blog posts, Facebook posts, and most of all PRAYERS said. All the HOPE we've had, all the dreams we have. So today.....................here is my bucket list:
1. Raise the remaining $365,000 we need for the clinical trials.
2. Cure my Charleston and all others from SMA.
3. Educate the world about SMA so no future babies have to go through it.
4. Make SMA a mandatory test for pregnant women.
5. Have my Charleston be able to reach his harms out to me someday.
That is when this nana will know I have served my purpose on this earth. Because I'm the luckiest nana in the world, and this is my journey with my Charleston. How I love you, little boy.
