A family in San Antonio is urgently seeking a cure for their 15-month-old son, Zayd Abdallah, who has been diagnosed with the ultra-rare genetic disorder known as Farber disease. This condition affects fewer than 100 children globally and is often overlooked or misdiagnosed due to its rarity. Zayd’s parents, Reem Eissa and Emad Abdallah, first noticed troubling developmental changes shortly after his birth.
“I started noticing he wasn’t lifting his head much anymore,” Eissa recalled. “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 just five months old. Farber disease is a degenerative condition with no FDA-approved treatment, and doctors have estimated Zayd’s life expectancy at a mere 2 to 3 years.
Rallying for Research
Despite the grim prognosis, Zayd’s parents emphasize his joyful spirit. “He’s so smiley, always very happy,” Eissa said. “He’s a fighter—he’s always been a fighter.” In a bid to support research into potential gene therapies, the family has initiated a campaign to raise $1.5 million. The funds will be directed to the SMA-PME Research Charity, an organization dedicated to clinical trials for rare pediatric neurodegenerative diseases.
To amplify their message, the family is utilizing social media platforms such as TikTok and GoFundMe. They are documenting Zayd’s journey while appealing for public support to fund research that could save lives. “I’m just so humbled by the fact that people are willing to be so generous to a stranger and her child,” Eissa expressed.
Community Fundraiser Event
In addition to online fundraising efforts, the family is organizing a community event titled “Hope for Zayd” on November 16, 2023. This fundraiser will take place from 10:00 to 13:00 at Project Cowork Castle Hill, located at 11103 West Avenue, Suite 2101. The event will feature a raffle, silent auction, and food to help generate additional funding for Zayd’s treatment and research initiatives.
For those interested in supporting Zayd’s cause, tickets can be purchased for the event, and donations can be made directly to the GoFundMe campaign. The family’s heartfelt plea not only raises awareness about Farber disease but also underscores the urgent need for viable treatments for children affected by rare diseases.
As Zayd’s journey continues, his family remains hopeful that their efforts will lead to breakthroughs that could change the lives of other children facing similar challenges.
