A family in San Antonio, Texas, is urgently seeking support for their 15-month-old son, Zayd Abdallah, diagnosed with the extremely rare genetic disorder known as Farber disease. With fewer than 100 known cases worldwide, this terminal condition often goes undiagnosed, leaving affected families in a desperate search for treatment.
Zayd’s parents, Reem Eissa and Emad Abdallah, began noticing troubling developmental changes in their son shortly after what appeared to be a healthy start. “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 was diagnosed with Farber disease at just five months old, a degenerative disorder for which there is currently no FDA-approved cure.
Medical professionals have provided a grim prognosis, estimating Zayd’s life expectancy at only 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 Abdallah. Despite the challenges, Zayd continues to display a vibrant spirit. “He’s so smiley, always very happy,” Eissa noted. “He’s a fighter—he’s always been a fighter.”
Community Effort to Support Research
In response to their son’s diagnosis, the family has launched a public campaign aiming to raise $1.5 million to fund research into gene therapy that could lead to a potential cure. The funds will be directed to the SMA-PME Research Charity, which supports clinical trials for rare pediatric neurodegenerative diseases. Utilizing platforms like GoFundMe and TikTok, the family is sharing Zayd’s journey and calling on the community to contribute to 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 expressed, highlighting the power of community support in their quest for a cure. To further raise awareness and funds, the family is organizing a ‘Hope for Zayd’ fundraiser on November 16, 2023, from 10 a.m. to 1 p.m. at Project Cowork Castle Hill located at 11103 West Avenue, Suite 2101, San Antonio.
The event will feature a raffle, silent auction, and food, providing a platform for the community to come together for a common cause. Tickets for the event can be purchased online, and those interested in following Zayd’s journey can find updates on TikTok.
Zayd’s story sheds light on the challenges faced by families dealing with rare diseases. As the community rallies around the Abdallah family, their efforts serve as a reminder of the importance of awareness and research funding in the fight against rare genetic disorders.
