Meet our Miracle Kids: Ja-Vione - Toledo News Now, Breaking News, Weather, Sports, Toledo

Meet our Miracle Kids: Ja-Vione

Posted: Updated:

Ja-Vione Turnbow's childhood hasn't been like most.


"I was tired all day long," he said.

For the past five years, since he was seven years old, Ja-Vione says he's constantly fallen asleep.

"I would come home and do my homework and like, fall asleep during my homework."

His mom, Felicia Foster says when she would try to wake Ja-Vione up, he would look straight at her, appearing to be awake, but he wasn't.

"She would try to wake me up and I'd get in a bad mood. Then I would probably go get something to eat," said Ja-Vione. 

"You can't shake them or wake them up like that, because they get angry so it's very difficult to get him up, sometimes to where he'll kind of snap. And I have to be like, 'J, Do you know who you're talking to? I'm here. This is Mom.'"

"He'll be like, 'Okay Mom.' You know, I kind of have to snap him back to reality."

In reality, Ja-Vione has Sleep Apnea and Narcolepsy. These are disorders that interfere with his ability to sleep and function like a typical kid.

Because of his sleeping disorders, Ja-Vione ís overweight and has trouble in school. He is 12 years old, but in the fourth grade.

Felicia says the biggest challenge is school.

"Teachers not really understanding his situation. You know, he'll get the anger, the throwing of the chairs, you know, stuff like that. Getting suspended and then his grades dropping from being tired and missing tests because he's too tired to take the tests. Being too tired to do his homework has held him back."

With Narcolepsy, the brain has difficulty controlling its sleep cycles, so someone could fall asleep at any time.

"He started falling asleep at the table, in the plate and then food in his mouth, falling asleep. Then I knew it was something more," said Felicia.

Rahm Reddy, MD, a Pediatric Pulmonologist and Sleep Specialist at Mercy Children's Hospital treats Ja-Vione and others with these disorders.

To find out if there's a medical reason why they're not sleeping, patients are brought to the Pediatric Sleep Clinic at Mercy St. Anne's Hospital.

"We do a sleep study to see if they have something like Sleep Apnea," said Dr. Reddy. "Even children can have Restless Leg Syndrome. And is there anything else going on that is affecting the child's sleep?"

Ja-Vione's treatment at Mercy Children's Hospital has helped.

After surgery and sleep studies, Dr. Reddy entered Ja-Vione into a medical drug trial.

One medication seemed to improve his quality of life, but he's not eligible for the drug.

"It actually made him better," said Felicia. "But we can't get the medication because he's not old enough."

"There is no FDA approved medication for children as of yet, but Ja-Vione is one of them. He is participating in an international study developing some new drugs for children with narcolepsy. Hopefully there will be some help," said Dr. Reddy.

That's his mom's biggest hope and one of Dr. Reddy's goals, that one day Ja-Vione can be on a medication that will help him succeed in life.

"He wants to play football so bad," said Felicia. "We tried baseball last year. He fell asleep on the benches so that didn't work out. I just want him to succeed and be the best that he can be in life. There's a lot of things that he wants to do and I'm just hoping and praying that we can continue on here and find out everything that's going on and what else we can do to make not just his life better, but other kids that's going through the same thing."
 

Follow Toledo News Now:  

Copyright 2014 Toledo News Now. All rights reserved.