NEW LONDON, N.C. -- Eight-month-old Sadie Rae Haywood is a happy baby.
“She is very happy, smiling,” said Jason Haywood, Sadie’s father. “She loves to clap."
Jason and his wife Ashley say Sadie is doing much better these days after spending months in the hospital when she was first born.
Sadie had problems breathing and also had bleeding on her brain.
“They couldn't answer why she had all the issues she had in the hospital," Ashley said.
After several tests, doctors diagnosed Sadie with Sanfilippo syndrome, a rare genetic disease with symptoms similar to Alzheimer’s disease.
Most children who have it don't reach adulthood, the parents were told by doctors.
"I try to make everything happy because we don't know how long we have with her," Ashley said.
Jason and Ashley say it's a matter of time before Sadie starts showing signs of the disease.
“At 2, they start having some mild learning disabilities," Jason said.
Doctors say symptoms gets worse, the older the child gets.
“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,” he said.
Doctors told the couple that most children with the disease die at a young age.
"It's hard to be told your kid would die in her teens,” said the mother. “That's hard."
Jason and Ashley are trying to get Sadie into a clinical trial for gene therapy at a hospital in Ohio, but patients have to be at least 2 years old to get in.
That means another year of waiting, and the waiting list is already long.
“There's so many kids in front of us,” Ashley said. “There's only six more spots open.
In the meantime, the parents are raising awareness and trying to raise money to fund more clinical trials.
"We've done all kinds of fundraisers,” she said. “We've been in some newspapers."
It’s hard work they say they'll keep doing until Sadie gets treatment and a chance at a normal life.
"We want to see her get married and grow up and have her own kids," Jason said.
For more information or to help, go to savingsadierae.org.