A North Carolina couple received devastating news as their 8-month-old baby was diagnosed with a debilitating disease.
Jason Haywood, father of 8-month-old Sadie Rae, says his baby is smiling and happy. But as WGHP reports, Sadie Rae has a very serious condition.
When Sadie was born she spent months in the hospital with breathing problems, as well as bleeding in her brain. She was diagnosed with Sanfilippo syndrome, a rare genetic disease with symptoms similar to Alzheimer’s.
Medline Plus defines Sanfilippo syndrome as a metabolism disorder which prevents the body from properly breaking down long chains of sugar molecules. The syndrome causes severe neurological symptoms, such as blindness, mental disability, and seizures.
"I try to make everything happy because we don't know how long we have with her," Ashley said.
Most people with Sanfilippo syndrome don’t live past their teen years, and some die in childhood. “A lot of seizures, a lot of suffering,” Jason said. “At age 10, they probably can't walk anymore and would be confined to a wheelchair.”
"It's hard to be told your kid would die in her teens,” said Sadie's mother. “That's hard."
Jason and Ashley are currently trying to get Sadie into a clinical trial for gene therapy, but patients have to be at least 2 years old to enter, which means waiting another year.
“There's so many kids in front of us,” Ashley said. “There's only six more spots open.”
In the meantime, they are raising awareness for the disease by giving interviews to local newspapers, and trying to raise money through fundraisers.
While there is no known cure for Sanfilippo syndrome, Jason and Ashley haven’t given up hope. "We want to see her get married and grow up and have her own kids," Jason said.