Rebecca Sernovitz might say that she ran the half-marathon in Miami on Feb. 6 to raise money for Chai Lifeline, an international children’s health support network that assists children with lifelong illnesses, along with their families. But Sernovitz was really running for her 13-year-old son, Sam, raising more than $13,000 for the network.
Running the race and spending the weekend with her husband, Temple Kol Emeth’s Rabbi Larry Sernovitz, her son and two daughters, “made Sam feel special,” said Rebecca. “People he loves were doing something for him.”
Sernovitz’s husband has participated in Bike 4 Chai, a fundraising bike ride, but she had never raised money for Chai Lifeline. She had run a half-marathon before, in 2019, along with several 5K and 10K runs, but this was different, said Rebecca.
Chai Lifeline has made a huge difference in the family’s life, she explained, because Sam was born with familial dysautonomia, a genetic disorder that impacts the development and survival of certain nerve cells. The disorder disrupts cells in the autonomic nervous system, which controls involuntary actions such as breathing, swallowing, digestion and the regulation of blood pressure and body temperature.
The condition is found almost exclusively in people of Ashkenazi, or Eastern European Jewish descent, and is one of the Jewish genetic disorders for which JScreen, a public health initiative based at the Emory University School of Medicine, screens clients. Approximately one in every 3,700 Jews are affected, with about 1 in 31 being a carrier of the disorder. In the general population, though, it’s extremely rare.
When Sam was born, “we immediately knew” something was wrong, Sernovitz said. “He was struggling to maintain his body temperature and he was jaundiced. It took four months, however, to get a diagnosis.”
Every day is a challenge for Sam, she said. He has feeding tubes and a special machine to help him breathe while he sleeps. “There’s a good day one day, and then a bad day. But he is such a champ. He’s such a good sport.” Although athletics and learning can be challenges for Sam, last September, he had his bar mitzvah.
“His greatest strength is how he makes people feel,” Sernovitz said. “He knows everyone’s name and forms relationships with people. He makes people feel special.” At his elementary school in Philadelphia, from which the family relocated nearly two years ago, he was nicknamed “the mayor.”
According to Sernovitz, who is a senior manager at Price Waterhouse Cooper, Chai Lifeline “provides support for families going through medical challenges.” At one point, for example, Sam was hospitalized over the weekend, and Chai Lifeline brought the family a Shabbat meal.
Sam also attends a special two-week overnight camp, Camp Simcha, for children with chronic medical conditions. The camp, which offers regular activities such as ziplining and motorboat rides, also has a one-to-one camper-to-counselor ratio, she said. Chai Lifeline doesn’t charge for the camp, which is another reason the family wanted to give back to the organization.
Now, it’s one of the first calls the Sernovitzes make when they need support. When they arrived in Miami, Sernovitz realized that they had misplaced Sam’s feeding tube supplies. All she had to do was call the local office of Chai Lifeline and the supplies were provided to her at her hotel.