Mother Hopes to Raise Awarness about Rare Disorder after Son’s Death

April 21, 2006, Lancaster News

Article in the Lancaster News regarding KLS and Ryan White, who died of a heart disorder.

By Johnathan C. Ryan, Staff Writer

Donna White wants to spread awareness about the illness that changed her son’s life seven months prior to his death.

Ryan McKinney, 19, remembered by his friends as a good guy with a captivating smile and sense of humor, died on Feb. 17, after collapsing at Bryan Hospital in Columbia. Doctors tried to resuscitate him at Palmetto Richland Hospital.

It’s been determined that McKinney had cardiac arrhythmia when he collapsed, but doctors have yet to determine the exact cause of death. White said the family is still waiting on toxicology results.

White said her son was diagnosed with Kleine-Levin Syndrome (KLS) by neurophyschiatrist Dr. Jimmy Pacheco last November. KLS is an extremely rare neurological disorder, affecting about 400 people diagnosed worldwide. There’s no known cause or cure for it.

“It’s so rare, so that’s why research gets so little funding,” White said. “But for young people, and anyone with it, it robs them out of huge bits of their lives.”

KLS causes one to sleep for unusually long lengths of time, often 20 hours or more, and active periods are complicated by short-term memory loss, large appetites, irritability to light and noise, childlike behavior and singing.

The disorder hits boys at four times the rate than girls. It usually appears in the preteen years.

Slow diagnosis

Luckily for McKinney, KLS didn’t rob him of his teenage years.
McKinney’s first believed KLS episode, and the only one before 2005, came when he was 13.

In 1999, he went through extensive testing at Palmetto Baptist Hospital, but was released with a long list of negative results. Doctors then diagnosed him with an unnamed virus.

He wasn’t touched by KLS again until last summer.

“It just came back again, out of the blue,” White said.

McKinney would sleep for great lengths of time, and when he got up, would lift weights and have a huge appetite.

“He would just eat and eat,” White said.

She said his cravings were ice cream and cheeseburgers, which coincided with symptoms of extreme dizziness and headaches.

“He wanted ice cream all the time,” she said. “Couldn’t get enough of it.”

McKinney nearly missed his large 19h birthday party, thrown by friends and family due to a sleeping episode.
“I tried three or four times to get him up before I actually did,” White said. “He was very reluctant.”

Last summer, doctors first suspected alcohol or drug use when they began treating McKinney, but soon concluded neither alcohol nor drugs had anything to do with his symptoms.

In August, a doctor diagnosed McKinney with mononucleosis and indicated he needed more testing.

After more tests, doctors ruled out numerous diseases, including leukemia and sickle cell anemia. He was, however, diagnosed with encephalitis, an inflammation of the brain.

In November, after being diagnosed with KLS, McKinney was weaned off medicines he had been prescribed.

McKinney was in the hospital for seven straight months undergoing testing, and his mother visited him often. Although McKinney was sometimes confused, he and his mother would sometimes laugh and cry while remembering past happy times.

But other times weren’t so good.

“It was like he was in a dream state when he was awake and I was visiting,” White said. “He would ask if this was real and how he got to the hospital.”

White said she believes God and her son knew his time was coming. She said they both cherished those seven months they were given.

White said she hopes the toxicology reports will answer her remaining questions about her son’s death.

White’s daughter, Gloria Scott, is helping her mother through the grieving process.
“I get a lot of my strength from her,” Scott said.

Scott, 22, cried as she recalled her brother’s calming ways when she was working to get through her senior year at the University of South Carolina-Upstate last year.

“I remember talking to him on the phone, when I would be crying about papers, but he would cheer me up,” she said. “He would say, “Come on girl, just suck it up.’ “

Scott said it was difficult to come home every weekend with her brother’s KLS setting in last fall. It was also hard to explain to hometown peers what was going on with him, and some of them couldn’t comprehend it, she said.

Friends remember

Friends remember McKinney’s humor and relaxed approach to life.

“Ryan was a comedian by nature,” said good friend Josh O’Neal. “He had a very carefree disposition and could really relieve tension.”

Lancaster County School District spokesman David Knight, who teaches Learn TV, said McKinney videotaped the LHS basketball games.

“He had a really good heart and was a good kid,” Knight said. “He wouldn’t hurt a soul.”

O’Neal and friends memorialized McKinney’s life with a video that was aired on Learn TV earlier this year.

A 2004 graduate of Lancaster High School, McKinney was planning to start training at York Tech to become a master welder before KLS episodes resurfaced.

KLS research is now being done primarily at Stanford University School of Medicine in Palo Alto, Calif. White said researchers are looking into possible links between mononucleosis and KLS.

“My goal is to be an effective advocate for KLS research and raise awareness that it does exist,” she said. “If I yell long enough and loud enough, then hopefully not another family will have to go through what we went through.”

Donations in McKinney’s memory may be made to the Kleine-Levin Syndrome Foundation.

Written by KLS Foundation

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