Layla was born a few weeks before Christmas. She brought so much joy with her contagious laugh. She grew as a typical baby the first year of life , walking, talking exploring and full of energy She called me mom and ran after her brother all day until the summer of 2016 when I saw Layla shake in a way that I can never forget. She progressively began to deteriorate and I saw her begin to stutter and stop using words she once knew. She called me mom until the very last day she stopped speaking. She began to trip until her legs finally gave out.
Her body began to be consumed in myoclonic movements twitching all day. The geneticist sent me home with an online print out that showed a grim prognosis. Four years have passed and instead of going into 1st grade, Layla spends her days at the hospital, therapies and clinics. Instead of tea parties and ballet, Layla is immobile and sits in a wheelchair until she is repositioned. Unable to accept my daughter’s death sentence, I spent many nights emailing and searching for a doctor that had any knowledge of this disease. A year later I received a reply that I thought would never come; A team of researchers in Texas have been using Gene Therapy to cure children with a similar disorder.
The Neurologist was familiar with Layla’s disease and said they are able to help. The gene therapy program is ran solely off of donations which means the only way we can save these kids is by sharing our story.