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Living with Myotonic Dystrophy: Jalei Mannis

She can hula-hoop with the best of them and do it with a smile Jalei Mannis feels right at home at Camp Aldersgate.
She can hula-hoop with the best of them and do it with a smile Jalei Mannis feels right at home at Camp Aldersgate.

This 9 year old loves the outdoors and has no problems making new friends.

This is a good day for this curly red haired bundle of joy. But the bad days are hard to forget.

"Well the bad days are like, I'm going to throw up. I'm going to have a sore throat and I'm going to have a tummy ache."

The first six years of Jalei's life were a challenge. She was always sick and her parents had no idea why.

"We never knew what was wrong. We always knew something was different. We always knew something was wrong but we never had a name for it."

But now they do; it's called myotonic dystrophy -- a chronic and slowly progressive muscular disease that affects roughly 30,000 people in the u.s.

The disease causes muscles to weaken -- usually beginning in the hands, feet, neck or face and can eventually include the heart.

“What was it like when you finally got a diagnosis?” Kevin Kelly asks.

“Almost relief,” Jalei's mom says. “Because we knew. Because we always knew something was wrong. She didn't hit her milestone when she should and talk when she should. She was always delayed."

Visits to specialists and children's hospital are helping Jalei make progress.

And she doesn't focus on the disease or what might lie ahead because according to her, the only thing she's dealing with is a severe case of Beiber Fever.

Beiber fever is treatable but myontonic dystrophy is not. At least not yet.

"My fear is one day she won't be able to walk and roam like she does now and that she'll end up in a wheelchair."

So they march on and pray and hope that the miracle happens, cherishing every moment.

"She's a very, very happy child and so... she's a joy. The challenges don't compare with the joy she is to us."

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