HOME2018-07-30T13:36:32+00:00

We only have a small window of time before the disease progresses and Layla requires eating through a tube.

LAYLA NEEDS YOUR HELP

About Us

The Layla’s Hope Foundation was founded in hopes of being able to financially support the urgent research and gene therapy program needed to save the life of not only Layla, but all children affected by Progressive Myoclonus Epilepsy 3 (PME 3 for short) otherwise known as gene KCTD7.

Progressive meaning that each day we are losing time to bring back Layla from the nightmare she has progressed into due to PME 3. We are in collaboration with world leading researchers in order to create a cure for all children that suffer from this horrid disease.

Layla’s Gallery

As we look at the photos and videos of what this disease took from them and us please share our story and help us try and save them and all the other kids who’s families have to watch their children suffer.

Miliana’s Gallery

Our Story

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.

Layla Needs Your Help

To Cure Progressive Myoclonic Epilepsy 3

Please mail your donation to the following address:

Layla’s Hope Foundation
1042 N Mountain Ave #B 240
Upland, CA 91786

323-351-8809

You can also make your contributions straight to the hospital.

DONATE HERE