5. Teach The First Family About SMA
The First Lady and I recently learned about the challenges you are facing, and we want you to know how much we admire your courage and strength at this difficult time.
As you continue your brave battle, I hope the support of your family and friends brings you peace and comfort each day. Please know the First Lady and I will keep you and your loved ones in our thoughts and prayers.
15. My First Kiss
From Cooper, a little boy who also has SMA.
19. The Last Thing I Want To Do: Overcome My Illness
“But if not, then I’d like to take one last breath, then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents (Tommy, Laura, Jim, Walter, Julia, Joseph, and Audine).”
“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.”
UPDATE: Sadly, Avery has passed away.