Ayden Moody, who is almost 8, is the youngest of Jeff and Janell Moody’s four children and the only son in the Lafayette, Ind., family. “He’s very outgoing, and he loves to drive his sisters crazy,” Janell says.

As an experienced mother, Janell knew something was different when Ayden was born. Within 24 hours of his birth on May 1, 2003, he was diagnosed with craniosynotosis, a condition in which one or more of the joints between the bones of an infant’s skull close prematurely, before the brain is fully formed. As a result, the baby’s brain cannot grow in its natural shape and the head becomes misshapen. Janell’s labor felt different to her because Ayden’s head, fused at the forehead, was solid.

Ayden’s Riley doctors are pediatric neurosurgeon Jodi Smith, M.D., and pediatric plastic surgeon Robert Havlik, M.D. Ayden has undergone three complicated surgeries, the first in October 2003 at 5 months old. In each of two surgical revisions, June 2008 and September 2009, one of Ayden’s ribs was removed and used to restructure his skull. He has had two other surgeries: one in August 2007 to address an unrelated disorder called Chiari malformation in which brain tissue protrudes into the spinal canal; and another in October 2008 to release a tethered spinal cord, a neurological disorder linked to the Chiari malformation.

Today, Ayden is doing well developmentally and has returned to school and basketball. “Ayden’s ability to persevere and to do so with a smile is a testament to what a champion he is,” says Kelly Coleman, his former principal. “No feeling sorry for himself-just rolling with the punches and trying to help others along the way.”

Ayden’s spunk reflects his parents’ attitude: “We’ve never treated him like he’s fragile,” Janell explains. “Of course he has some limitations, but we try not to make him feel like he can’t do something everyone else can do.”

The Moody family participates in local events that benefit Riley Hospital to share their story of hope and perseverance. They are supporting Lafayette Jefferson High School as it organizes its first Riley dance marathon. Ayden has collected pop tabs for the Ronald McDonald House, participated in the K105 Lafayette Riley Radiothon and promoted Riley Children’s Foundation on local television news. He loves to tell people, “Riley’s the coolest place in the world.”

Ayden is aware that his stays at Riley Hospital are shorter than those of children with other serious illnesses, which makes Janell especially proud of her son’s big heart: “He sees children with a more serious disability than him, and he feels empathy for them.”

 
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