15-month-old Zayd had a great first two months – after that, his parents say they noticed some challenges.
SAN ANTONIO — A San Antonio family is in a race against time to find a cure for their 15-month-old son, Zayd, who is battling an extremely rare and terminal genetic disorder known as Farber disease.
Fewer than 100 children worldwide are believed to have the condition, which often goes undiagnosed or misdiagnosed due to its rarity. Zayd’s parents noticed developmental changes just weeks after what had been a healthy start.
“I started noticing he wasn’t lifting his head much anymore,” said Reem Eissa, Zayd’s mother. “We slowly started noticing that he always clenched his fists and wouldn’t let us open them to clean them.”
The family says Zayd was diagnosed with Farber disease at five months old. The disorder is degenerative and has no FDA-approved cure. Doctors have given Zayd a life expectancy of just 2-to-3 years.
“All children with rare diseases deserve a chance just to have treatment that’s viable so they can sustain life,” said Zayd’s father, Emad Abdallah.
Despite the diagnosis, Zayd’s parents say he remains full of joy.
“He’s so smiley, always very happy,” said Eissa. “He’s a fighter—he’s always been a fighter.”
Now, the family is launching a public campaign to raise $1.5 million to support research into gene therapy that could potentially lead to a cure. The funds will go to the SMA-PME Research Charity, which supports clinical trials for rare pediatric neurodegenerative diseases.
Using platforms like TikTok and GoFundMe, the family is documenting Zayd’s journey and urging the public to help fund potentially life-saving research.
“I’m just so humbled by the fact that people are willing to be so generous to a stranger and her child,” Eissa said.
A ‘Hope for Zayd’ fundraiser for the fight to cure Farber Disease will be held Sunday, November 16 from 10 a.m. to 1 p.m. at Project Cowork Castle Hill at 11103 West Avenue, Suite 2101. There will be a raffle, silent auction and food. To purchase tickets, click here.
To follow Zayd’s journey on TikTok, click here.