Among the more than 30 Chicago-area runners who have laced on their shoes for Team Lifeline's 2016 Miami Marathon weekend in January are Sara Porush and seven of her family members. Together they comprise Team Dovi, named in honor of 18-year-old Dovi Porush, who has spent the last ?? summers at Camp Simcha Special.
Dovi, the oldest child of Sara and her husband Benji, was diagnosed with familial dysautonomia, a genetic disease linked to Jewish children, when he was two months old. Sara and Benji were just 20 at the time. They were terrified, with no idea of what the future held.
As the name suggests, children with this condition have malfunctioning autonomic nervous systems, wreaking havoc with functions that we normally don't think about, including blood pressure, swallowing, body temperature, and even heartbeats. Chai Lifeline has been a constant in the Porush household. The entire family has enjoyed myriad Chai Lifeline services, from sibling programs to holiday parties to support during challenging times when Dovi is hospitalized.
Familial dysautonomia is extremely rare, but his summers at Camp Simcha Special (CSS) have allowed Dovi to meet and befriend others with this condition. In addition to the amazing camp activities at CSS, Dovi met other children with FD, which significantly expanded his social universe. It's safe to say that his camp friends are among his best friends now.
This summer will be Dovi's last summer at the camp. To express their gratitude to Chai Lifeline and CSS for all that Dovi has gained, Sara put together Team Dovi earlier this year. Though she has run in five previous half-marathons with Team Lifeline, Sara acknowledges that this year is special - and poignant. "Camp Simcha has played an invaluable role in Dovi's life," she said.
Team Dovi is comprised of Sara and Dovi, Sara's twin sister, sister-in-law, nieces and nephews. Dovi will be pushed in a jogging stroller by the boys, who have trained by pushing a jogging stroller with 75 pounds of weight along a boardwalk.
"When Dovi was born we had no idea how our lives were going to be, but we've been successful in raising him and a huge portion of our success has come from Chai Lifeline," Sara stated.