Have you heard of Avery?
Avery is a precious baby girl who died yesterday from a currently incurable genetic disease called Spinal Muscular Atrophy type 1(SMA). SMA is the #1 genetic killer of infants & children under the age of 2, yet most people have never heard of it, most OB/GYN's do not offer tests for it, and it's not included when performing genetic pre-screening tests for other potential diseases & disorders. There is currently no cure and it attacks the muscles which causes inefficiency of the major bodily organs - especially of the respiratory system - and eventually leads to death.
I came across her blog a few weeks ago, and was moved to tears as I read her story. I can only imagine being faced with the reality that your baby was going to die, and knowing there is absolutely nothing you can do about it. As I read her blog, I was blown away by her parents' determination to make the most of the days they had with their daughter.
I had been waiting until today (May 1) to share Avery's story. Avery had dubbed today as "Ellen's Going to Love Me, But Not My Friends" Day. In an effort to help spread awareness about SMA, Avery's dad had asked her blog readers to contact Ellen DeGeneres so Avery could hopefully be on the show. Although Avery will not have the opportunity to dance with Ellen, I know she is completely healed and dancing with Jesus!
While I rejoice for Avery, I can't help but feel heartbroken for her parents. Please join me in saying a prayer for them tonight. I'm sure they are suffering terribly as they go to sleep without their baby girl.