Family desperate for help after experimental medicine is taken a - WNEM TV 5

Family desperate for help after experimental medicine is taken away

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Imagine your child is diagnosed with a neurological disorder, you find the right medication that begins to improve their condition, then it's taken away.

That's what happened to a local family and now they are desperate for help.

Owen Zeager looks like your typical six year-old, he loves to swing and play with action figures but his parent's say about five years ago their world was flipped upside down.  

"He didn't start to walk until he was about 18 months old. His speech was a little bit delayed. We just noticed certain things were kind of off," said Owen's father Tim Zeager.

Around the age of one, Owen was diagnosed with Fragile X syndrome. Fragile X is a genetic neurological disorder that is caused when the X chromosome in the DNA structure is fragile or broken. The X chromosome creates a protein that guides the sensory signals in the brain.

"[Doctor's] said imagine Atlanta Hartsfield Airport, there's planes coming in and out all day long, the air traffic controller tells who to go where, his brain operates without an air traffic controller," Tim Zeager explained.

According to symptoms can include poor eye contact, sensory disorders and aggression.

To help control his symptoms, Owen has been taking the experimental drug Arbaclofen. His symptoms began to improve. However in May, Seaside Therapeutics, the maker of Arbaclofen, stopped producing the medicine.

"Within a week of him being off the medicine, we saw a lot of his old behaviors that maybe we had even forgotten he had. They came back. A lot of pacing, hyperactivity, hand flapping," Owen's mother Melissa Zeager said.

Seaside Therapeutics released a statement citing resource limitations and "unproven safety and efficacy" as the reason they put a halt to production.

Tim Zeager said they wanted the community to realize how important it is to have children tested for Fragile X syndrome.

Research shows 80-90 percent of those affected with fragile X go undiagnosed or misdiagnosed; as the symptoms closely mimic those of Autism.

The Zeager's along with other Fragile X families are taking to the Internet signing petitions  and writing letters to congress The Zeager's hope with community involvement, Seaside Therapeutics will be convinced to start Arbaclofen trials again.

Until then, the Zeager's said they would continue to do whatever it took to make sure their son and children around the world live the best life possible.

"The greatest thing about my son is- I'll try not to cry. He's a really smart kid. I think it's awesome for people to know that my son is a human being who has feelings. He's just like everybody else; it's just at this point he doesn't know how to express himself," Melissa Zeager said.

More resources:

National Fragile X Foundation website

Fragile X and Autism Families for STX209

Petition: Sponsor Arbaclofen/ STX209 Study for children with Autism and Fragile X

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