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It’s been a year since the first walk in memory of Ryan McKinney, and during the second annual walk Saturday, progress will be celebrated and new goals highlighted.
Starting at 10 a.m. at the Lancaster High School track, the public is asked to stop by for three hours of fun, learning and remembering the life of McKinney, a former Lancaster High School student who died of a heart attack in February 2006 while hospitalized in Columbia. He was only 19.
At the time of his death, McKinney was suffering from a little-known disorder called Kleine-Levin Syndrome. He had suffered from it for six years before being diagnosed.
KLS is a voracious disorder that robs sufferers of active lifestyles. It causes its sufferers to sleep an upwards of 20 hours a day with active hours of confusion, fatigue and abnormal eating, among other things.
A lack of knowledge about the disorder is one of the reasons for Saturday’s event, according to Donna White, McKinney’s mother and founder of the S.C. Chapter of Kleine-Levin Syndrome.
Awareness and money must be raised to ensure that all who are suffering from KLS are diagnosed and receive proper treatment, White said.
“Our goal has been to raise both public awareness of this disorder, as well as that of the medical community,” said White, who was recently named to the national KLS Foundation’s advisory board. “Hopefully, parents will be helped who are searching for answers.”
White said local efforts are helping the nationwide effort and that both are in “the business of helping save lives.”
Saturday’s event will start with an opening ceremony that will include prayer, a welcome from LHS Principal Dr. Joe Keenan and singing from the LHS Gospel Choir. After that, people can wander the track’s infield and socialize, visit information booths, hear storytelling from White’s daughter, Gloria “Gigi” Scott, get face paintings, enjoy a moonwalk and take pictures with Philadelphia Eagles star Sheldon Brown for $3. Brown will also be signing autographs.
A barbecue lunch, prepared by Dr. Johnny Dukes, will be sold for $7. It will include pulled pork barbecue, baked beans, slaw, dessert and a drink.
There also will be an auction of NFL memorabilia and items donated by local businesses. The event will close with the LHS track and field team doing a relay run around the track, followed by White and former KLS sufferer Dani Farber leading attendees in a walking lap around the track to remember McKinney.
Farber will also discuss the disorder with anyone who wants to know about it. Now a graduate student at Columbia University, Farber spent most of his teenage and undergraduate college years fighting KLS, losing large segments of what people like to call one’s “best years” to long sleeping spells.
Farber serves as an example of how an early KLS diagnosis can prevent misguided treatments that McKinney endured prior to finally being diagnosed with KLS.
Nearly $10,000 raised at first walk
The money from last year’s walk was sent to the national KLS Foundation to support research efforts into the cause and treatment of the disorder. There is no known cause or cure for the disorder, which is estimated to have only 500 diagnoses in the United States and few more worldwide.
Because it is rare, sufferers may have to visit several doctors before getting a correct diagnosis.
Since the event last year, a lot has been accomplished, White said. Local organizers have been recognized as starting the first statewide chapter for the disorder.
Word about the disorder has spread to Gov. Mark Sanford, who has proclaimed Saturday as KLS Day in South Carolina. The governor encourages South Carolinians to learn more about KLS and work together to raise awareness of the disorder in his proclamation, which will be read at the event.
“The local site is linked to the national one and can be used by struggling parents who are wondering what could be wrong with their child,” White said.
The foundation’s Web site also includes information on its research efforts. The foundation was recently awarded a grant from the National Health Institute to study a possible genetic cause for the disorder.
If you’d like to make a donation, visit any Founders Federal Credit Union branch and ask to donate to The Ryan McKinney Memorial Fund or mail a check or money order to The S.C. Chapter of Kleine-Levin Syndrome of Lancaster, P.O. Box 903, Lancaster, SC 29721. Make checks or money orders payable to The Ryan McKinney Memorial Fund.
For more information on Saturday’s event and local awareness/fundraising efforts, call White at (803) 235-0126.