Jake Hofacker, 7, had a blast at the inaugural Levine Jewish Community Center Kids Triathlon last June.
Jake was one of 150 children age 5-14 to participate, and one of only 10 children from the Adaptive Sports and Adventures Program.
Jake swam one length of the pool (25 meters) – with the assistance of his father, Matthew Hofacker, 44 – biked a quarter-mile in his adaptive bike and ran a quarter-mile wearing orthotic braces.
“Jake does not swim on his own,” said his mother, Ellis Straley, 42. “If Jake was kicking and moving his arms, then that counted as swimming, and my husband would move him forward.”
In 2007, Jake was diagnosed with a rare blood-vessel disorder called moyamoya, which affects one out of 3 million people, said Straley. Moyamoya is characterized by the progressive narrowing of the ring of blood vessels at the base of the brain. This narrowing restricts blood flow to the brain and may cause transient ischemic attacks, or mini-strokes, a stroke or other symptoms, according to the Mayo Clinic.
“Jake went to bed a perfectly fine, almost 2-year-old boy,” said Straley. “He woke up and couldn’t walk. He suffered five strokes in 35 days.”
The Hofacker family was fortunate that a local neurologist was able to diagnose the problem and suggest a course of action. Jake had corrective brain surgery at Boston Children’s Hospital and has been in physical therapy, occupational therapy and speech-language therapy for six years to regain motor skills. He now walks using ankle-foot braces and uses an communication device to speak.
Cognitively and mentally, Jake is now a typical 7-year-old and is a mainstreamed first-grader at Endhaven Elementary, said Straley. “His is the best-case scenario in a bad scenario,” she said.
For the last 2 1/2 years, Jake has participated in ASAP to enjoy activities like sled hockey, baseball and snow skiing. ASAP is a Carolinas HealthCare System community program that provides recreational and competitive sports opportunities for youths and adults with physical disabilities.
Last year, the Hofacker family heard through ASAP that the Levine JCC was holding a kids triathlon to benefit the organization and the pediatric rehabilitation programs at the Levine Children’s Hospital.
Jake was the last one to finish the race, said Straley, but he thought it was great.
With the support of friends, family and his parent’s co-workers, Jake was the top fundraiser: As such, he and his family will go on a Disney World trip in June for a three-night stay with Park Hopper passes, courtesy of Mann Travels.
“I find him incredibly motivational,” said Straley. She said Jake’s attitude is: “OK, I got sick. Now it’s time to get over it.”
The inaugural Levine JCC Kids Triathlon raised more than $35,000, said Julie Rizzo, Levine JCC director of social action and development.
“If $30,000 is raised (this year) for the Levine JCC Kids Triathlon, then the Leon Levine Foundation, through a challenge grant, will donate an additional $10,000,” said Rizzo. Mann Travels again is donating a Disney trip to the top fundraiser.
Children 5-14 are invited to participate in the second annual Levine JCC Kids Triathlon at Shalom Park on June 2. Participants will compete in heats based on age group, and up to 175 children may enter. Distances are age-dependent. Children may also form relay teams if they don’t want to do all three events.
Marissa Brooks is a freelance writer. Have a story idea for Marissa? Email her at firstname.lastname@example.org.
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