“We tried to balance between the worry and fear and knowing that we shouldn’t jump to conclusions,” DeWitt recalled. Two weeks after seeing Green, a pediatric neurologist ordered the genetic test for FA. And because Jack was troubled by a new symptom — a racing heartbeat — he saw a pediatric cardiologist who diagnosed hypertrophic cardiomyopathy, a thickening of the heart muscle that can result in sudden death.
The genetic test confirmed the family’s worst fears: Jack had a severe form of FA, an illness that his mother said “has no treatment or cure and that robs him of his abilities and his future.” Two years after his diagnosis, his parents remain hopeful that a treatment will emerge in Jack’s lifetime. DeWitt said she knows of no other cases in her family or her husband’s. Jack’s younger brother has been tested; he, like his parents, is a carrier, as is one in every 90 Americans.
Green said she now believes that what looked like mild cerebral palsy was in fact the early manifestation of FA.
DeWitt said she is grateful for the years her family did not know the truth. “I would not trade those years of doing everything we were already doing for the sadness and life-changing experience that dealing with FA is,” she said.
One of the most searing moments occurred several months ago, when the family was attending an FA conference. “Jack asked me, ‘So you might live longer than I will?’ ” his mother recalled. His parents, who are in their mid-40s, had to tell their 12-year-old that the answer was probably yes. “In kids [like Jack],” she said, “you definitely start worrying when they’re in their 20s.”
But the DeWitts are determined not to spend their time dreading the future. “We knew we needed to do whatever we could for Jack and to enjoy every moment and not look backward with regret, and that’s what we’ve done,” DeWitt said.
Jack, a seventh-grader who is set to celebrate his 13th birthday at the end of the month by hosting a party at home with friends, said the hardest part is not being able to do what his friends can. He is in a wheelchair full time and attends school with an aide. When he feels down, he listens to rap music, plays video games or goes outside with his dog.
“You can’t feel sorry for yourself all the time,” he said. “You just have to keep going with your head held high.”
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