The yearlong fundraising campaign to help pay for a potentially life-saving treatment for a rare childhood disease met its $1.8 million goal Friday morning.
Less than a week after Columbia’s O’Neill family launched one final push to cap off their “Saving Eliza” fundraiser in honor of their daughter Eliza’s 5th birthday, their GoFundMe online site had surpassed their goal by more than $16,000 as of Friday afternoon.
Last year, Eliza O’Neill was diagnosed with Sanfilippo syndrome, a rare genetic disease that causes a toxic material to build up in children’s brains and bodies, leading to severe disability. By age 6, most children with the disease have irreversible brain damage and lose the ability to speak. Many don’t live beyond their teens.
Leading up to Eliza’s 5th birthday on Sunday, the family made a final big push to reach their goal by the end of Eliza’s big day. The money from their Cure Sanfilippo Foundation will go toward funding a gene therapy clinical trial they hope can save the lives of their daughter and other children.