My daughter, Whitney, was only 2.5 weeks old when we received a call from our pediatrician saying her newborn screening showed up positive for Spinal Muscular Atrophy type 2/3 She told us to not Google it (We did and sobbed) and we would be receiving a call from a neurologist soon with the next steps. Our hearts shattered. We didn’t know how much longer we’d have with our new baby.
Only a few minutes later we recieved a call from a wonderful pediatric neuro who told us where to go the very next morning to confirm the diagnosis. After the confimation, we were told that Zolgensma (a one time dose medicine) is the best option, although it isn’t a cure, it sure does act like it. Zolgensma costs $2.1 million per dose making it one of the most expensive drugs in America. She was the third child to be dosed in the state of Louisiana.
Administered through an IV, Whitney handled dosing and everything else like a STAR (words from her neuro) and has no showing symptoms of SMA. However, she had no startle reflex as a baby and has no reflexes in her legs which means she was regressing while we were fighting insurance for this medication.
There’s LOTS of after- dosing- care to do (like labs and such) which has been extremely difficult but she’s done amazing with everything.
Kids with her type of SMA are not expected to live past 2 but she just celebrated her 3rd birthday on Cinco De Mayo.
Thank you for letting me share my Star! ⭐️ 🤍
