Nick Long of Brownsburg, Ind., doesn’t think his life is hard. It’s a remarkable outlook considering cerebral palsy, periodic seizures, growth hormone deficiency and optic atrophy are among the many medical conditions the 17-year-old deals with daily.
Nick entered this world nearly three months earlier than expected. To ensure his only chance of survival, doctors performed an emergency C-section on his mother, Sheila. They immediately detected an obstruction in his intestine that can indicate cystic fibrosis. Sheila held Nick for a mere five minutes before he was rushed to specialists at Riley Hospital for Children.
A second diagnosis revealed accumulation of fluid on Nick’s brain. A tube was inserted in hopes of draining the excess spinal fluid into his bloodstream. He spent most of the first nine months of his life at Riley.
“The nurses were so kind, so in tune with our needs,” Sheila said.
Nick’s birth was the start of a long medical history. He has persevered through more than 40 surgeries and countless challenges. Through the journey, the Long family has remained optimistic as well as eager in their involvement and support of Riley Hospital.
Nick has proven to be an outstanding advocate for sick kids. His signature philanthropic event occurs in July when he joins friends John Andretti and Dave Wilson for the annual Kroger Race for Riley presented by Cheerios.
The renowned driver was charmed by Nick’s personality years ago.
“One of the most special [Riley] kids I have gotten the pleasure and honor to know is Nick Long,” said Andretti. “He is never without a smile and always has a clever comment or two. He is a true gentleman, Riley representative and my buddy.”
A new challenge has recently emerged as Nick’s optic nerve continues to deteriorate, inhibiting his ability to see.
“I was extremely emotional at our last appointment,” said Sheila. “Nick looked at me and said, ‘I’ve seen everything I need to see, mom. I’ll get around just fine.’ It absolutely broke my heart; he is so strong.”
Despite his trials, Nick continues to smile. A junior at Brownsburg High School, he participates in the Community Based Instruction (CBI) program and Best Buddies. Teaming up with Andretti for television and radio interviews has helped spark Nick’s interest in information technology, an area he is able to explore as a student.
“Nick has grown from a boy into a fine young man,” added Andretti. “He has become the face of Riley and a source of inspiration for all who face daily challenges.”