Local Families Say Shutdown Is Hurting Their Kids - New York News

Local Families Say Shutdown Is Hurting Their Kids

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Some local families say the government shutdown is hurting their kids. Their children are struggling with a rare genetic disease and they're losing precious time while every day congress is at an impasse.

Fox29's Kelly Hessedal introduces us to frustrated parents begging Washington to help their kids.

"My oldest son Ryan is 8 years old and my youngest son Brayden is five years old," Carl Kapes said.

The Wilmington, Delaware resident said his boys are everything to him. Every day he loses a little bit of them.

"Because it's a genetic disorder we only saw symptoms in Ryan," Kapes said.

Both boys have been diagnosed with Sanfilippo Syndrome Type-A, a disease so rare that one in every 70,000 babies are born with it.

As it progresses, children lose the ability to speak, walk, and eat and usually don't live beyond the age of 15.

Carl watched his once healthy sons quickly regress back into functioning as if they were toddlers.

"In 6 to 8 months my son lost all of his speech so were in a race against time," Kapes said.

"Every day you see your child deteriorate in front of your eyes it's just heartbreaking," said Dolores O'Neill.

She and her husband Joseph know what Carl is going through.

Their 3-year-old granddaughter, Eliza was just diagnosed with the disease a few months ago.

"Our son told us this we were in disbelief we cried did a lot of crying," she said.

But both families had hopes for a breakthrough.

Researchers are getting close to a cure; they've managed to cure mice of Affil's Syndrome. Human trials were supposed to start next year.

The government shutdown furloughed FDA employees and federal grant writers, both key players in moving the process forward.

"It's difficult that were so close and something like this is setting us back," Kapes said.

Both families are begging lawmakers to end the shutdown.

"Look at what you're actually impacting, you're impacting children's lives," O'Neil said. "Please let's get back to business lets help these little children,"

You can get involved with these families by liking their Facebook causes at Eliza's Story and Team Sanfilippo.

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