Florida teen has rare disorder that makes him sleep for weeks

Posted at 4:53 PM, May 10, 2017

Michael Hamper, a teenager from Florida, is at what should be one of the most exciting times of his life. 

"This past semester, I did get straight As and I'm in the senior year of this medical program," Michael said. 

He's about to graduate from Palm Beach Gardens' High and wants to become a doctor like his father. But instead of worrying about prom and college, he is worried about falling asleep. 

"When it comes to relationships with friends, family, school is a big one: I lose everything when I'm in an episode," Michael said.

Michael was 14-years-old when the symptoms began. 

"My head started feeling really, really weird," Michael said. 

He stayed home for two days with a fever but his parents quickly realized something was really wrong. 

"He said to me: Mom, when you talk to me, I see your mouth moving but the words are not coming into my brain," Michael's mother Ruth Hamper said. 

Throughout the next few months, Michael saw a variety of doctors and was misdiagnosed several times. Some doctors said he had viral infections, others diagnosed him with depression or eating disorders. 

Michael's father Chris Hamper knew it had to be something else. 

"That there was more to it. Something neurological was happening to our son," Chris said. 

At that point, Michael was sleeping for 20 hours a day and couldn't do even the most basic tasks.

"He needs help with the shower," Ruth said. "He can't brush his teeth, he doesn't know what to do with a toothbrush." 

The family flew to a see a specialist in Boston, bringing Michael over in a wheelchair since he was asleep for most of the time. 

A doctor at the Boston's Children's Hospital saw Michael walking to the buffet and grabbing pasta with both of his hands and binge eating. 

The diagnosis was Kleine-Levin Syndrome.

"I balled my eyes out," Michael said. "Not because I have this disorder but because I had an answer." 

The diagnosis is life-changing for the entire family. 

"It's like I'm a five-year-old autistic kid," Michael said. "There's confusion, there's babbling." 

During an episode, Michael will not be fully aware of his surroundings even when he is awake. Doctors told the family someone has to look after him 24 hours a day, 7 days a week when he's in an episode. 

"They said that if he were to fall in our pool, he would drown because he would actually think he's in a dream," Ruth said. 

Michael's episodes typically last for two to three weeks and then he is back to normal for about two weeks. 

"There's a sense of relief: I'm back in the real world again," Michael said. 

When he wakes up, the first thing he asks is how long he was out this time and what he missed. 

During one episode, his grandfather passed away. 

No cure in sight, the family is working hard not to let the disease control Michael's life. 

"It's a crushing blow to me as a dad to see my son go through this knowing how smart he is," Chris said.

"I look at him," Ruth said. "And I see how strong he is and it helps me to go on."

Even when Michael is out of an episode, he can tell when he is getting closer to the next one. 

"I'm probably at 60 percent right now," Michael said when asked if he feels 100 percent himself. 

In April, Michael was awarded the "Hero in Medicine" award from the Palm Beach County Medical Society.

Chris Hamper has since become more educated on Kleine-Levin Syndrome and is diagnosing patients from across the state, many of whom had been living with the wrong diagnosis for years.