‘Saving Sadie Rae’ fundraiser held for NC toddler

WILMINGTON, NC (WWAY) — Friends, family, and strangers played volleyball Saturday to raise money for one North Carolina girl.

Sadie Rae Haywood was born with sanfilippo syndrome, a childhood form of Alzheimer’s with no known cure.

Her family is raising awareness about the syndrome with hopes to get their young daughter into a trial soon. One way they are doing so is through this fundraiser at Capt’n Bill’s Backyard Grill.

While the Haywood family doesn’t live in the area, they traveled to Wilmington to spread the word about Sadie and her story.

“The thing about Sadie is that she is very young and children with sanfilippo are generally not diagnosed until 3, 4, 5, or 6 and at that point they have already experience regression so potentially if Sadie could get treatment now she could potentially live a normal life,” father Jason Haywood said.

Haywood said it costs $2 million to start clinical trials for children suffering from a rare disease. But there are currently no clinical trials due to the large expense to get one started.

All the money goes toward the Cure Sanfilippo Foundation.

There will be an online fundraiser on May 24.

How you can help —> Saving Sadie Rae

Categories: Local, New Hanover

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