Meet Zoya! She is our 5-year-old girl fighting every day to beat GABRG2!
We have received the news that a life-changing mRNA therapy is ready, sitting in the lab, waiting to be tested. The only thing that is lacking is funding. $40,000 of the $380,000 pre-clinical trial budget has been raised.
We have a drug.
We have the biotech.
We have the mice.
We just need the funding.
Zoya was diagnosed with this ultra-rare genetic disorder the day after her first birthday. As you can imagine, our hearts were shattered. The doctor on the phone couldn't tell us anything except this was a rare disorder with no cure and they didn't have any information about it.
At one point, we were told there were less than 60 known cases in the world.
Zoya’s symptoms include Nystagmus, Hypotonia, Developmental Delays, gross motor delays, and she is non-verbal. Zoya struggled to hit milestones from her first weeks. She started physical therapy at 5 months of age and has received it multiple times per week since then. In addition, she regularly receives occupational and speech therapy, among others.
Currently, her therapists are building her strength to help her work towards standing unsupported. She recently started army crawling her way around the living room, which is a huge milestone!
Despite all this, she wakes up every morning with the biggest smile on her face! Her big sister is by far her most favorite person and vice versa. She loves to give the tightest bear hugs to anyone that needs it and won't let go until you're ready. She loves music and dancing. She lights up everyone's world that meets her. And she is by far the strongest and most determined person we know. She is an inspiration for everyone in our family.
We were introduced to CURE GABA-A in late 2024 and were grateful by the support and knowledge they provided us. The determination of all families to find a cure for our kids is inspiring. The work they are doing at CURE GABA-A has given us hope!
Your donations go towards the non-profit organization, Cure GABA-A Variants, to fund the pre-clinical trials. Any amount you can donate will help Zoya and all the other families fund a cure that could change our lives!
Your donation is tax deductible.
Organizer
Patrick Abou-Jaoude
Organizer
Cure GABA-A Variants
Beneficiary

