Kid Courageous (page 2 of 3)

Good and Evil

Aidan's troubles go beyond his disease, and they started at an early age. "He's very aware of good and evil ever since his dad passed away," says his grandfather Joe Sullivan. Rich Fraser died at age 32 in the September 11 attack on the World Trade Center. He was an executive for Aon Corporation, a commercial insurance brokerage firm, and worked in the South Tower on the 92nd floor. Aidan knows a plane flew into the building, and he asks why it wasn't strong enough to stay up.

Suzanne says her husband's death was devastating, "but time helps everything. I have to take care of Aidan, and that makes you keep going. There's just no other choice." Taking care of Aidan is now a family affair; Suzanne and Rich's siblings and parents actively participate in his life. And it's an "incredibly, strangely happy life," according to Suzanne, who describes Aidan as "a stand-up comic. He's absolutely the funniest person I've ever met." His sunny disposition comes from his dad, she says, describing Rich as "sweet and nice and outgoing." So she takes her lead from that because she knows there will be no more Daddy's Days, the Saturdays when father and son went to the playground, the zoo, the library. In trying to explain the loss to her only child, she told Aidan, "Daddy is an angel," and says, "He thinks it's really cool that Daddy can fly."

Aidan was almost two and was recovering from his first NF1-related surgery when his father died. A few months earlier, the tumor had compressed his spinal cord, temporarily paralyzing his legs. Emergency surgery returned movement to his limbs, but his spinal column was weakened after part of it had to be removed. And the prognosis wasn't good. Suzanne was visiting doctors all over the country for help. Her quest led to a fortuitous meeting with neuro-oncologist Adam Levy, MD, director of pediatric neuro-oncology at the Children's Hospital at Montefiore in New York City, who had been a friend and soccer teammate of Aidan's dad's. That history forged a special bond and a search for new treatment options. Dr. Levy tried a series of chemotherapy regimens and medical therapies, and found that the drug interferon appeared to have played a role in stopping the growth of Aidan's tumor for the previous 18 months. "It was the first time in Aidan's life that the tumor was stable," he says.

Aidan's spine, however, was twisted and fragile, and his paralyzing fall lent a new sense of urgency. Explains Dr. Levy, "His mother called and said, 'Even if one of my hairs touches his arm, he screams and cries out.' He was in tremendous pain from the spinal cord being slung across his vertebrae."

The search led Aidan to the four-member team of specialists at the Children's Hospital at Montefiore. "I've been in practice for more than 20 years, and I'd never seen a spine that bad," says Rick Abbott, MD, the pediatric neurosurgeon who led the group. They took on Aidan's plight, completing the complex surgery over two days, in two separate weeks.

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