Feature Story

Jacob's Hero Learns About His Best Friend

CHARLOTTE, N.C.-- The race weekend at Lowe's Motor Speedway in October 2004 was a special one for Jacob Dennison. He was able to spend some time with his racing hero Jeff Gordon. You might have expected him to gush about his watching Gordon or have told him how exciting it was to meet him. Instead, he held out a framed photo and told Gordon that not everyone was there who should have been.

Jacob, like his sister before him, has a rare combination of ailments termed ataxia-telangiectasia, which is made up of cerebral palsy, cystic fibrosis, muscular dystrophy, immune deficiency, and cancer. The Make-A-Wish Foundation arranged Jacob's trip to Charlotte.

When he met Gordon, his racing hero didn't disappoint. "I was amazed at how laid back and down to earth he was. He was so friendly and personable to Jake. He made him feel at ease, as if he wasn't talking to a celebrity," said Stephen Dennison, Jacob's father. "He told Jake to tell him about himself. He asked if he had any questions for him. Jacob just told him about his sister, told him that he wanted him to know there was more to our story than just the three of us that were there. Jeff asked Jacob about Megan, and Jacob told him she had passed away. Jeff expressed his condolences and told Jake she was very pretty. He was just very nice."

Jacob and his parents attended both the Busch series race and the Nextel Cup event at the track. His father commended the track for its accommodations. "We were in the handicapped seating area off turn two," Stephen said. "You could wheel the chairs straight up. There were no stairs to go up or anything. You've have 3-4 seats in a group with two spaces left for two wheelchairs. The seats were excellent-- it was almost front-row seating by the track. A lot of venues put handicapped seating so far away, but this was very accessible."

The racing action captivated Jacob as he watched Gordon rebound from a mid-race crash to finish in second place. "He was really into it," Stephen said of his son. "He thought it was kind of neat to get to see these people he had seen on TV in person. It was so hard for him to really comprehend that they were right in front of him and not on TV."

Jacob's sister, Megan Dennison, passed away earlier this year shortly after her 17th birthday. Jacob is now 16. While no one can say how long he has, his mother noted that others with his ailment often pass away in their late teens or early 20's. Megan and Jacob were perfectly healthy at birth, but problems soon developed. "We both carry the gene and passed it on to them," Tammy said. "Both parents must be carriers. They were born 13 months apart and we had no idea they had this disease until they started walking. A month after they walked, we realized there was a problem."

Despite the illness, both remained upbeat. "Words can't describe Megan," her mother said. "She was very straightforward, very honest, very opinionated. She would tell it like it was. But mainly, she was sweet-- everyone who knew her, loved her. She was my sidekick, she was half of me. I enjoyed taking care of her so much and I miss her so much."

Jacob misses Megan as well, and that's why he wanted Gordon to know about her rather than talk about something trivial. "He misses his best friend," Tammy said. "He said that Megan was his best friend and he told Jeff Gordon that."

When his father looks at his son, he sees a perfect kid stuck in an imperfect body. "He's got so much potential," Stephen said. "You see him so limited by his condition and it's really hard to watch. You can see this little football, baseball, soccer player inside of him. He's kind of stuck, but he knows he could do these kinds of things if his body would let him."

Stephen, a master sergeant in the Air Force stationed at Wright-Patterson Air Force Base, credits the military for its support. "It's so structured, so family oriented," Stephen said. "Everyone rallied around us from the diagnosis to the hospital stays and extra time off. The Air Force has always understood."

The children have touched many lives as evidenced by the number of doctors and nurses at Megan's funeral. "A lot of doctors and nurses try to avoid funerals for patients," Stephen said. "But at Megan's funeral, there were a lot of doctors and nurses there. These are great kids. They have a lot of battles, but they're special."

Ruth Kohstall, the children's longtime nurse, will be participating in the Disney Marathon on January 9, 2005 in memory of Megan and in honor of Jacob. Kohstall is accepting pledges based on how many miles she runs in the 26-mile marathon. All funds collected will be donated toward research and treatment of ataxia-telangiectasia. If you are interested in sponsoring Kohnstall, call (937) 304-6767. Visit www.atcp.org for more information on the disease.

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