SMA-PME RESEARCH

Help Us Fund a Cure for Farber Disease and Save Zayd!

Our beautiful son, Zayd, was born in June 2024 with a soft cry and a gentle spirit. For the first two months of his life, we were in a state of pure bliss. Then, things changed. This is our ultra-rare story.

By 2 months of age, Zayd struggled to lift his head. His muscles were weak, and his joints stiff. He had trouble opening his hands and turning his head. We started physical therapy, hoping it was just a delay — or maybe just two new parents worrying too much.

More specialists. More tests. More worry.

And then came the diagnosis that turned our world upside down: Farber Disease, an ultra-rare, degenerative, and life-limiting disorder caused by mutations in the ASAH1 gene, leading to a deficiency in the enzyme acid ceramidase. Farber Disease affects fewer than 100 children worldwide. Farber causes progressive pain, joint stiffness, muscle weakness, inflammation, difficulty swallowing, and severe developmental delays.

We were told this condition is invariably fatal.

There is no approved cure — but there is hope!

This fundraiser supports the urgent development of gene therapy to treat Farber Disease — to bring hope not only to Zayd but to every child affected by this devastating disorder.

Every single one of them is ultra-loved.

We want to write Zayd’s story as one of resilience, healing, and hope. Please help us fight for his future by donating to support life-saving research.

Love,

Zayd’s adoring parents, Reem & Emad

How You Can Help Today:

1. Donate what you can, no amount is too small (donations are tax deductible)

2. Share on all social media with the hashtag #HopeforZayd & #FightFarber

3. Email or text our GoFundMe and these steps to your family and friends

4. Send us any and all online and offline fundraising tips!

Where The Money Is Going:

All contributions are tax deductible and go to SMA-PME Research Charity (501(c)(3)) to fund clinical trials for targeted gene therapy. Spinal Muscular Atrophy with Progressive Myoclonic Epilepsy (SMA-PME) is a sister disease to Farber, caused by mutations in the same gene, and the therapies being developed could benefit both, changing the lives of more children.

Zayd is only one of the children affected by these devastating conditions. Visit https://sma-pme.org/ to learn more about the stories of Adeline, Karina, Brayden, Kyndall, Noah, and others.

Let’s fight for a cure. Let’s fight for their childhoods.

#EndSMA_PME #FightFarber