STANLY COUNTY, N.C. (WGHP) — Imagine knowing there’s something that could help your child who is slowly slipping away and not being able to get your hands on it.

Ashley and Jason Haywood, of Albemarle, live that struggle every day with their 6-year-old daughter Sadie.

“She’s got the biggest personality of anybody I’ve ever known,” Ashley said. “People will ask on Facebook ‘is she really like that?’ because they’ll see videos on TikTok and social media. And she is!”

Sadie has Sanfilippo Syndrome, a rare neurodegenerative condition that affects about 1 in 70,000 births. It’s often described as childhood dementia and the average life expectancy is just 15.

“They lose all of the skills they have gained and normally that starts around three or four,” Ashley said. “We have been super blessed that at six, we still haven’t.”

Ashley attributes that to a clinical trial involving weekly enzyme replacement therapy that Sadie was enrolled in for two years at UNC Hospital. It ended in April 2021.

“I get that it’s part of life, and business decisions happen all the time,” Ashley said. “But you have kids’ lives at stake. So it’s more than just a business decision. It’s lives.”

More than a year after the trial ended, study results confirm what the Haywood family already knew: all six children involved in the clinical trial, including Sadie, improved.

“In a Sanfilippo world, that’s not normal,” Ashley said.

The Haywoods, who worked tirelessly to get the enzyme replacement therapy picked up by another drug company but were unsuccessful, aren’t giving up.

“It’s been a really big roller coaster ride with her diagnosis, but you can’t stop,” Ashley said. “You can’t give up hope. You have to keep going for them.”

They’re focusing their energies on what’s ahead for Sadie, including first grade and hopefully another trial. But they know time isn’t on their side.

“Nobody knows your kid better than you do, so you have to be their voice,” Ashley said. “You advocate for them. You do everything that you can whatever the disease is even if it’s not a disease. Just special needs kids in general. Just advocate at school, at the doctor’s office, everywhere. And don’t give up.”