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What It Means to Have a Rare Disease in the Family

What It Means to Have a Rare Disease in the Family

Coop and his family

Memories of growing up as a Reform Jew in Roslyn, Long Island, bring me a sense of comfort. Our family spent countless Friday nights at Temple Sinai, first praying and then eating sweets and drinking the best flavored soda around. Honestly, I could’ve done without the praying part and skipped right to dessert, but I knew it was all part of being Jewish. When High Holiday services arrived, I loved seeing people all dressed up and, while the rabbi spoke to us, playing with my mom’s rings. My focus back then was not on faith, but on being a good Jewish person and doing the right thing.

Fast forward 30 years. My faith in God has never been more important to me than during the last two and a half years – ever since my oldest son Cooper, at the age of 15, suddenly became extremely ill during his freshman year of high school. It started with the flu, but about two weeks later Cooper began sleeping 20 hours a day and seemed to have little if any understanding of the world around him. He awoke only to eat – often scarfing down two or three sandwiches at one time, all with his eyes closed – and go to the bathroom. Soon after, agitation and hallucinations set in, and we were left staring at a shell of our son. This wasn’t the boy we knew and loved. 

Fearful because we didn’t know what we were dealing with, we did know something was terribly wrong with Cooper, and so we rushed to the emergency room of our local hospital, where he was admitted to the ICU and remained for more than a week. Doctors ordered every test imaginable, but they all came back with the same result: normal. “Nothing is wrong with your child,” the doctors told us.

“How can this be?!” my husband, Gary, and I asked each other. Dumbfounded and frightened by all the unknowns and what they might mean for Coop’s future, we reached out to our rabbi at Temple B’nai Jeshurun in Short Hills, NJ, and asked that he keep Coop in his prayers. Rabbi Matt Gewirtz did what he could for our sick child.

Meanwhile, by the end of Coop’s nine-day stay in the ICU, despite medical experts’ recommendations that we move him to a “special” hospital, we brought him home. As parents, it is our job to love and protect our son, and we believe we can do that best if he is home with us and his younger brother. 

Distressed that our happy, healthy, fun-loving son had suddenly vanished, my sister-in-law began doing some research on all the was happening to Cooper. She came across something called Kleine Levin Syndrome (KLS), and based on our son’s symptoms, she was sure it was this horrific disease that was stealing his health. Her internet research uncovered this information about KLS:

  • An extremely rare and complex neurological disorder characterized by recurrent periods of excessive amounts of sleep, altered behavior, and disorientation 
  • The initial onset often follows an infection and predominantly affects adolescent males
  • A recurrence of symptoms and possible genetic predisposition suggests an autoimmune disease
  • The disease may be disproportionately frequent in the Ashkenazi Jewish population 
  • At this time there is no effective treatment or cure

We shared her findings with Cooper’s doctor, who was not familiar with the disease. After reading up on it, he came back to us and said, “There’s a one in a million chance Cooper has this disease, so I’m going to say he doesn’t have KLS.”

Defeated and heartbroken, our family, friends, and friends of friends – near and far – prayed for Coop, turning to their faith for guidance and for answers for our family during this scary time. It was our only hope. 

It’s a good thing the doctor wasn’t a betting man because, only three weeks after Coop’s initial episode, with help from a family friend, we saw a neurology specialist at a hospital in New York City. After hearing our story, reviewing all the notes I had taken since the nightmare began, reading the records from our local hospital, and examining Cooper, this doctor made the diagnosis of KLS. We’re among the lucky families because on average, it takes about four years before a KLS diagnosis is made.

Fast forward nearly two-and-a-half years. Cooper has had a total of five episodes to date, andhe currently is in his longest healthy stretch yet – one year, six months and many hours, but who’s counting?! For now it’s a diagnosis of exclusion, which means there’s no definitive test to confirm the disease other than to rule out all other possibilities, but our family has vowed not to let KLS win. We are fighting to raise awareness about the disease and funding for research to find its cause and its cure. We will not rest until we do.

For more information about KLS, visit the Kleine Levin Syndrome Foundation or the National Institutes of Health Kleine Levin Syndrome Information Page. To learn about another family affected by a rare disease, read “Amyloidosis? Yes, You Need to Know.” 

Jenny Grossmanand her family are members of Temple B’nai Jeshurun in Short Hills, NJ. She serves on the board of the Kleine Levin Syndrome Foundation.

Jenny Grossman
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