Tired of Sleeping: South Florida teen suffers from rare ‘Sleeping Beauty syndrome’

(WSVN) - WSVN — Imagine going to sleep and not waking up for weeks. That nightmare is reality for a South Florida teenager dealing with a rare disease. 7’s Brian Entin has our special assignment report “Tired of Sleeping.”

Eighteen-year-old Michael Hamper is a black belt in tae kwon do, a straight-A student and an all-around great kid — but he’s silently struggling.

Michael Hamper, 18 years old: “The world keeps spinning, and mine stops pretty much.”

When Michael goes to sleep, he doesn’t always wake up. He sleeps for two weeks at a time.

Ruth Hamper, Michael’s mom: “Every time he has an episode, I walk into his room and I am in tears. And I just look at him because he lays there like in a coma.”

Michael has a rare disease called Kleine-Levin syndrome.

It’s nicknamed Sleeping Beauty syndrome, but there’s nothing beautiful about it.

Chris Hamper, Michael’s dad: “He goes from an extremely active, well-spoken, adult grown man, to a 2-year-old child in a matter of hours, sometimes minutes.”

When Michael goes into a sleep episode, he can’t be left alone. His dad has to help him shower, and his parents have to take care of his every need.

And it can happen at any moment — even while out shopping with his mom.

Michael Hamper: “They have to do everything for me — brushing my teeth.”

Only a handful of young adults in Florida are known to have the rare disease.

There’s an estimated 3,000 people suffering worldwide.

Michael Hamper: “I’ve missed birthdays, holidays, and oftentimes I don’t know that I have until I’m out of an episode and ask.”

Getting diagnosed was not easy, because the disease is so rare. Michael spent months going from hospital to hospital, but the answer didn’t come until he traveled north to Boston.

Dr. David Urion, Boston Children’s Hospital: “It’s the classic one in a million.”

Boston Children’s Hospital Dr. David Urion diagnosed Michael after weeks of testing.

The neurologist says he has only seen two cases of Kleine-Levin syndrome in his entire career.

Dr. David Urion: “It is horribly disruptive. If you think of this idea of sleeping for weeks on end, or being so tired you might as well be asleep, and in between not being yourself.”

There’s no cure for the disease, but experts say it typically goes away on its own after about 10 years.

Until then, Michael is trying to live life to the fullest, even sky diving.

He’s getting ready for college at Florida Atlantic University, which will pose new challenges.

Ruth Hamper: “If he goes down, we need to get to him right away to keep him safe.”

Michael and his family hope by spreading awareness, there will be more research for treatments and a cure.

Until then, this teen lives not knowing when he’ll go to sleep. Or when he’ll wake up.

FOR MORE INFORMATION:
Kleine-Levin Syndrome Foundation

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