A family desperate to save their little girl may break a GoFundMe crowdfunding record as they try to keep her from a suffering a tragically short life.
If your child had a debilitating, terminal genetic disease, you’d do anything to help save her, right? The O’Neill family from South Carolina is doing just that — and in the process, they may just break the GoFundMe crowdfunding platform’s record for the most successful campaign ever.
A devastating diagnosis: Sanfilippo syndrome
Last July, the O’Neill family received news that rocked their world — their little girl, Eliza, had Sanfilippo syndrome, type A. Sanfilippo syndrome is a degenerative genetic disease whose sufferers are missing a vital enzyme for normal cellular function. Affected children appear normal as infants, but as they grow, they begin to show signs of developmental delay and intellectual decline. Living past childhood is not typical, so parents must watch their child decline before their eyes before they succumb to the disease.
The O’Neills, however, have learned that there is an experimental medication that may halt the progression of the disease — a life-saving drug for their young daughter. Unfortunately, in order to get to the point where she could benefit from this medication trial, funds were needed. “The trial is lacking funding to make the medicine, administer the treatment, and remain on schedule, and every moment counts as Eliza approaches the tipping point when her disease will take an irreversible turn for the worst,” writes her dad on their GoFundMe campaign page.
The family had already raised $250,000 locally when they decided to launch a GoFundMe campaign, and they are getting very close to breaking that platform’s record as the highest-earning campaign to date. As of this writing, they were inching closer and closer to $800,000 and were third on the list of total money raised.
All funds raised will go towards the clinical trial, so Eliza and other children with the same diagnosis can have some hope. The family is trying to raise a total of $2.5 million to fully fund it by October, when the trial is scheduled to begin.