By all accounts, Rabbi Larry Sernovitz’ son Sam appears to be a happy, energetic child, munching on corn after a swimming session at Willowdale Swim Club. However, his family acknowledged it has been a struggle since a diagnosis of Familial Dysautonomia when he was only 4 months old.
“I’ve been an advocate for genetic testing and this can be discovered by a simple blood test. One in 27 Ashkenazic Jews are carriers of this disease. It’s an autosomal recessive disease which means both parents have to be a carrier in order for the child to be,” Sernovitz said during a conversation at the club on July 15.
“We found out something was wrong at the Victor Center for Jewish Diseases at Einstein Medical Center in Philadelphia. The world center for studying FD is at NYU and they were a huge help in finding out how to deal with the diagnosis because there is no cure.”
According to the National Institute of Health’s National Library of Medicine, FD is a genetic disorder that affects the development and survival of certain nerve cells. The disorder disturbs cells in the autonomic nervous system, which controls involuntary actions such as digestion, breathing, production of tears, and the regulation of blood pressure and body temperature.
Problems related to this disorder first appear during infancy: poor muscle tone (hypotonia), feeding difficulties, poor growth, lack of tears, frequent lung infections and difficulty maintaining body temperature.
“When you look at Sam, people dealing with FD say they’re like Broadway shows – they may look beautiful on the outside but to get them to where they are is an immense amount of work,” Sernovitz said.
For two weeks every summer, children living with cancer and other afflictions are granted the chance to forget about their illnesses and experience life simply as children. At Camp Simcha in upstate New York, hundreds of children are able to restore their fighting spirit and renew their determination.
In honor of his son, who is expected to attend the camp, Sernovitz will bike 180 miles through three states (New Jersey, Pennsylvania and New York) to Camp Simcha this summer through Bike4Chai.
Bike4Chai is a project of Chai Lifeline, an organization operating throughout North America that has staff in major children’s hospitals around the country committed to making hospital stays as uplifting as possible. In Philadelphia, it operates Chai House, for families in need of housing when their children need to have emergency surgery or treatment.
“When we were told (about the camp), we were blown away by it. There’s two sessions for boys and two for girls, each for two weeks, broken up into pediatric cancer and chronic illness. And it’s free for those families. The camp has a full medical staff and they take care of these kids’ medical needs,” Sernovitz added.
“We don’t know what the theme is gonna be, but last year, it was Disney and these kids got the world. The beauty is, as these kids get older, they want to give back too, working at Camp Simcha to make sure they can pay it forward.”
For his part, Sam is looking forward to seeing his friend he met at camp last year, who lives in Indianapolis. He also can’t wait to see his dad again at the end of the ride.
Sernovitz said Bike4Chai holds both a women’s and men’s ride, both of which start in Princeton and end up at the camp, which is north and west of the nearest sizable town, Port Jervis. The first day ends in the Poconos and the second ends at Camp Simcha.
“It’s about 108 miles the first day and the rest on the second day. When they asked me why I wasn’t involved in the bike ride, I didn’t even have a proper bike. But they told me there are people on this ride that shouldn’t be on bikes and they’re doing it – you can do it. I have a buddy who owns Keswick Cycles in Glenside, Pa., and I asked him if he could get me a road bike. He fit me out for a road bike and I started training last year,” he explained.
“I’ll be thinking of my son, who is at camp, and because Bike4Chai coincides with the time Sam’s there, I can ride right into camp and he’s there. Last year I biked in, lifted him up on my shoulders.”
Sernovitz is expected to participate in Bike4Chai on Aug. 14-15, with a goal of raising $7,500 by then. All donations are 100 percent tax-deductible. Those who wish to contribute can do so by visiting https://www.bike4chai.com/teamsammy.