Family of Young Girl with Sanfilippo Syndrome Raises $400,000 Towards a Cure

April 23, 2014

Eliza O’Neill has Sanfilippo syndrome, and her body and mind is expected to begin deteriorating within months without treatment. The family raised $160,000 alone within a week of releasing an online video about her to raise money to fund a clinical trial for the cure in Ohio – boosting funds to $400,000.

South Carolina parents have been receiving donations from around the world after releasing an online video in a desperate attempt to raise money to save their 4-year-old daughter’s life.

The family of Eliza O’Neill has garnered about $160,000 on its site alone since releasing the video, which explains Eliza’s story and the extremely rare disease called Sanfilippo syndrome, with which she was diagnosed in July. Eliza’s father, Glenn, told the Daily News that the family has raised about $400,000 through the online campaign as well as local events they have done in Columbia, S.C.

The brutal illness means that Eliza’s body and brain will deteriorate. Children with the disease lose their abilities to speak and walk, and rarely live into their 20s.

But the Nationwide Children’s Hospital in Columbus, Ohio, is developing a clinical trial to cure children with the disease. It will cost about $2.5 million to produce the treatment and run the trial.

“It has really taken off and we have so many good things in the pipeline,” Glenn O’Neill said. “It’s just incredible all the support we’ve received from all over the world.”

Glenn said the video was the catalyst for the recent surge in donations.

Read more here.

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