LIVINGSTON, NJ — “Tough times don’t last, tough people do” is the mantra being used in the ongoing effort to support a Livingston High School (LHS) sophomore suffering from a rare neurological sleeping disorder often referred to as “Sleeping Beauty Syndrome.”
Cooper Grossman, a typically healthy and active teenager, was on family vacation in February when he began experiencing bizarre symptoms that included a sudden need to sleep 20 hours a day, a ravenous appetite and other behavioral changes. After testing negative for brain tumors, infectious diseases and anything else that might have explained his behavior, Cooper’s aunt discovered that all of the symptoms pointed to a little-known disorder called Kleine-Levin Syndrome (KLS).
“It was like he was stuck in a surreal dream-like state and no one knew what was wrong with him,” said Jenny Grossman, Cooper’s mother. “We called the hospital to ask about the syndrome and no one had ever heard of it, but Cooper had every possible symptom under the sun.”
According to the KLS Foundation, KLS is a rare and complex neurological disorder characterized by “recurring periods of excessive amounts of sleep, altered behavior and a reduced understanding of the world.” These periods of time are known as “episodes,” which can last for days, weeks or even months at a time. For Cooper, they have lasted between nine and 15 days.
Since Cooper’s diagnosis, friends and family have stepped up to raise awareness and funding for research.
“When I first found out about it, I was pretty shocked because I had never heard of this disorder and I could only imagine how difficult it has been for the entire family,” said Cooper’s varsity soccer coach Roger Rubinetti. “We knew that he was a little bit down in the dumps and nervous early on—as anybody would be because you don’t know when these episodes will come on or what triggers them—so when we found out, we wanted to get as much support out there as possible.”
In addition to wearing KLS T-shirts on game days to support their teammate, the members of the LHS boys soccer team recently sold some of these shirts to help raise funds as well. This Saturday, Oct. 21, the players and coaches will participate in the first annual “Coop-a-thon” at YB Fitness in Short Hills.
The indoor cycling event, organized by Jenny’s friends Stacey Koplitz, Jayme Lipkin and Stacey Horowitz, has raised nearly $75,000 already for the KLS Foundation. Bikes sold out quickly, but supporters are encouraged to still use the gym during this time or donate to the cause by clicking HERE.
“The outpouring of support has been amazing,” said Jenny. “The support is what helps you get through tough times, which is really amazing and it gives us the strength to keep going.”
Due to his inability to process information during an episode, Cooper missed nearly six weeks of school during his freshman year and his mother was not able to leave the house during that time. Although Cooper has not experienced symptoms since his last episode in June, Jenny said she and her family will stop at nothing to help find a cure.
In the meantime, Cooper’s family will take every day that he is able to get up and go to school as a gift because there is no telling when another episode will strike.
“The reason that I’m on a mission to help people is because there are people that are completely misdiagnosed and are sent to mental institutions and are medicated and never given the opportunity to come out of the episode,” said Jenny. “There are not many doctors trying to do research because it’s just not known, and I truly believe in my heart that there are people who have KLS that are misdiagnosed because no one has ever heard of it.”
Jenny thanked Cooper’s friends, teammates, teachers and coaches for their constant effort to understand what he’s experiencing and for “not letting him skip a beat” in between episodes. Since Cooper cannot verbalize “the torture that his brain is feeling when he’s stuck in this surreal-like state,” Jenny said the sheer love and support is the best gift anyone could give him.
To learn more about KLS and how it affects patients, visit the KLS Foundation website by clicking HERE.