A family in San Antonio is mobilizing efforts to raise funds and awareness for their 15-month-old son, Zayd Abdallah, who has been diagnosed with a rare and terminal genetic disorder known as Farber disease. This debilitating condition affects fewer than 100 children worldwide and is often misdiagnosed due to its rarity. Zayd’s parents, Reem Eissa and Emad Abdallah, first noticed concerning 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. The degenerative nature of Farber disease means there is currently no FDA-approved treatment, and doctors estimate Zayd’s life expectancy to be between two to three years.
Raising Awareness and Funds
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 response to the challenges posed by this rare condition, the family is launching a public fundraising campaign with a goal of raising $1.5 million. The funds will support research into gene therapy, which offers hope for a potential cure.
The campaign will benefit the SMA-PME Research Charity, which facilitates clinical trials for rare pediatric neurodegenerative diseases. Utilizing social media platforms like TikTok and GoFundMe, the Abdallah family is documenting Zayd’s journey and appealing to the public for support. “I’m just so humbled by the fact that people are willing to be so generous to a stranger and her child,” Eissa shared, expressing gratitude for the outreach they have received.
Community Event to Support Zayd
To further their fundraising efforts, the family will hold a ‘Hope for Zayd’ fundraiser on November 16, 2023, from 10:00 to 13:00 at Project Cowork Castle Hill, located at 11103 West Avenue, Suite 2101, San Antonio. The event will feature a raffle, silent auction, and food, allowing community members to engage in Zayd’s fight against Farber disease while contributing to research.
For those interested in supporting the cause, tickets for the fundraiser can be purchased online. The family hopes that through their efforts, they can not only raise necessary funds but also bring greater awareness to the challenges faced by children with rare diseases like Farber. As Zayd’s journey continues, his family’s commitment to advocating for treatment remains steadfast.
