Ayden Wagler is the happiest kid you will ever meet. “She is a hugger,” says her mother, Angie Wagler. “Ayden is determined, outgoing and does not know a stranger.” The Odon, Ind., fifth-grader is a multi-sport athlete who hopes to be a cheerleader when she gets to middle school next year. The fact that she moves through life with the help of a prosthetic leg seems to fuel her determination rather than limiting her ambition.
At 8 months old, Ayden was diagnosed with neurofibromatosis (NF) and pseudarthrosis. NF is a rare, progressive disorder that causes tumors to grow inside and outside of the body. It affects about one in 3,000 children, and five percent of children with NF will develop long bone pseudarthrosis, a condition which causes spontaneous bone fractures.
Ayden’s family chose Riley Hospital for Children at Indiana University Health for much of her treatment. At age 3, it became clear Ayden’s leg would not heal properly after a fracture and her family decided to have it amputated in order to improve her quality of life. Not even that significant surgery could slow her down. “When she went through the amputation, she was bouncing on the trampoline a week later,” Angie says. “She got me through that tough time. She is unstoppable.” Ayden even participated in a T-ball game soon after surgery, hopping around the bases on one foot because it was too soon to use a prosthetic leg.
Now 11 years old, Ayden travels to Riley several times a year and sees Riley Pediatric Neurologist Aline Hamati, M.D. “Ayden has always struck me as a beautiful, strong girl, full of life, who is always positive and very active. She is a fighter and a very fun girl,” Dr. Hamati says.
“I’m happy to tell people about NF or show them my prosthetic leg,” Ayden says. “It is a part of who I am, but really, I am just a normal kid who likes softball, crafts and dolphins.”
While there is no cure for NF, there is hope. Riley/IU School of Medicine physician scientists have been awarded a prestigious five-year, $12 million grant from the National Cancer Institute’s Specialized Programs of Research Excellence Initiative (SPORE) to study NF closely. Wade Clapp, M.D., Chairman of the Department of Pediatrics at the IU School of Medicine, and his colleagues are leaders in neurofibromatosis research. In 2008, their team reported that the drug Gleevec appeared to be the first effective treatment for some patients with NF type 1 tumors. Subsequent work by Dr. Clapp and his colleagues led to testing of two other drugs that are also significantly reducing these tumors in children and adults with NF1.
“It makes me feel wonderful that Riley is researching NF,” says Angie. “Hopefully, the new research will bring them closer to a cure, and children with the disease will have a better life.”
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