March 26, 2008, The Stoneham Independent, March 26, 2008
Imagine that you’re in the prime of your high school life and the picture of health: a talented hockey player and athlete, a hard-working student and someone well-liked and respected by your peers and your teachers. Then in the blink of an eye, you’re living in a dreamy fantasyland where everything feels like a sleepwalk, you’re sleeping 20-23 hours a day and you can’t function in the classroom or even keep awake long enough to attend Stoneham High hockey tryouts.
You and your parents know that something is wrong and the doctors tell you that its mononucleosis. Except it’s not mono.
During the rare moments that you are awake your demeanor comes across as possibly drunk or drugged out, but that’s not the truth either. This is exactly what happened to Stoneham High School senior Joe Penney when he was a 15-year-old sophomore at Stoneham High, and he first came down with what doctors eventually diagnosed as Kleine-Levin Syndrome.
Starting during the first week of hockey tryouts, Penney basically slept for three weeks straight, waking for only on hour or two a day to eat or go to the bathroom and then had no recollection of the prior three weeks when he came out of the “episode.” “I really don’t remember anything at all from the entire time,” said Penney. “It all ends up feeling like a dream and you’re not sure afterward if things that you said and did really happened. “The doctors first thought it was mono, but the symptoms didn’t seem to match up and when it came back a couple more times we knew it wasn’t mono,” said Penney. “The episodes have become shorter and aren’t as drastic as the first few were, but it definitely makes schoolwork and living a normal life a challenge.”
Penney’s disorder, which is commonly referred to as KLS and affects only 500 people in the world, is a rare and complex neurological disorder characterized by periods of excessive amounts of sleep and altered behavior. The disorder strikes adolescents like Penney primarily, but doctors have no concrete theories on its cause or a surefire cure. “Joe’s case is one that the doctors are studying to try and find answers for,” said Penney’s mom Christine, who now sits on the advisory board of the KLS foundation – a group designed to raise awareness and money for KLS research. “No one wants to hear that your child is sick, and it was difficult to hear that the doctors had no answers for his condition.
After we got a diagnosis of KLS, we were then told there is no treatment…nothing the doctors can do for Joe. “We realized it was up to us to get involved in helping our son and other families,” added Christine Penney. “This disease is so rare, that there is little funding for research, the money raised by fundraising goes directly to a doctor at Stanford University in California who is studying KLS and trying to find a treatment.”
At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), waking only to eat or go to the bathroom. When awake, the patient’s whole demeanor is changed, often appearing “spacey” or childlike. According to the web site www.klsfoundation.org, when a patient with KLS awakens from an episode they experience confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy). Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light.
According to the Penneys, KLS seems to strike most people during their adolescence and someone can experience separate episodes for anywhere from 4-10 years before the condition completely clears. Penney made the most of his healthy windows of time and has been an inspiration to teammates and classmates at Stoneham High, as he has maintained his honor roll status at SHS and served as a co-Captain on the hockey team this season.
Penney played in 14 games as a senior and contributed a goal and six assists while skating with fellow seniors Roy Monson and Devin Plummer – a smaller portion of a group of nine seniors that grew up skating together in Stoneham Youth Hockey and really banded together as a unit this season. “We really got close as the season went along, and you realize how much you love the game of hockey when it’s taken away from you for spans of time over the last three years,” said Penney. “The coaches were great about letting me know to tell them if I needed a break, or if I wasn’t feeling well. But I just wanted to work hard and play hockey just like everybody else. “Every day that I wake up and I’m aware of what’s going on is a good day for me, so things like school and hockey become so important,” added Penney.
As captain, Penney helped bring back the team pasta parties and the players dressing up in shirts and ties for the games – and was awarded with the High School Hobey Baker Award for courage at the end of the season after persevering through his illness. SHS hockey coach Bill Seabury and his teammates presented Penney with a Spartans hockey jersey signed by all of his teammates during the winter sports banquet, and the senior was overcome by the thoughtful gesture. “These are the guys that I’ve grown up playing with and these are my best friends on and off the ice,” said Penney. “It meant a lot to me to know that they were supporting me and they had me in mind at the end of the season.”
Penney’s family and friends held their second KLS fundraiser at the Montvale Plaza last weekend and estimated they were able to raise a ballpark figure of $40,000 for KLS research after raising $39,000 last season. “We thought it was going to be much smaller, to be honest, when we first got started,” said Christine Penney, who hopes to continue the fundraiser annually. “But the community really got involved and this thing has taken on a night of its own. Joe came to the event this year after not making it last year, and everyone had a great time for a good cause.”
Penney will be graduating from Stoneham High in June and has applied to UMass-Lowell, UNH and Wentworth Institute with plans to study construction management and someday own his own company – a continued Penney success story amidst adversity that enjoyed one of its best chapters during this past winter’s high school hockey season.