A family in San Antonio is mobilizing support to find a cure for their son, Zayd Abdallah, who is diagnosed with the ultra-rare genetic disorder known as Farber disease. At just 15 months old, Zayd’s condition is terminal, with fewer than 100 children worldwide reported to have this disorder, which often remains unrecognized due to its rarity.
Initially, Zayd appeared to develop normally, but his parents, Reem Eissa and Emad Abdallah, began to notice concerning signs shortly after his birth. “I started noticing he wasn’t lifting his head much anymore,” Eissa explained. “We slowly started noticing that he always clenched his fists and wouldn’t let us open them to clean them.” Zayd received his diagnosis at five months old, and the degenerative nature of Farber disease means he has a life expectancy of only 2 to 3 years.
Rallying for Research and Support
Despite the grim prognosis, Zayd’s parents emphasize their son’s resilient spirit. “He’s so smiley, always very happy,” noted Eissa. “He’s a fighter—he’s always been a fighter.” In response to the challenges posed by Zayd’s illness, the family is launching a campaign to raise $1.5 million for research into gene therapy that could potentially lead to a cure.
The funds will be directed to the SMA-PME Research Charity, an organization dedicated to supporting clinical trials for rare pediatric neurodegenerative diseases. To mobilize support, the family is utilizing social media platforms, including TikTok and GoFundMe, to document Zayd’s journey and encourage donations for vital research.
“I’m just so humbled by the fact that people are willing to be so generous to a stranger and her child,” Eissa expressed.
Upcoming Fundraiser Event
To further their cause, the Abdallah family is organizing a fundraiser titled “Hope for Zayd,” scheduled for November 16, 2023. The event will take place from 10:00 to 13:00 at Project Cowork Castle Hill, located at 11103 West Avenue, Suite 2101, in San Antonio. Attendees can expect a raffle, silent auction, and food, with all proceeds going towards Zayd’s treatment. Tickets for the event can be purchased through their campaign page.
For those interested in following Zayd’s journey or contributing to the fundraising efforts, further details can be found on TikTok and GoFundMe. The Abdallah family’s determination to raise awareness and funds for Farber disease exemplifies the power of community support in the fight against rare diseases.
