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Meet Nick: 2019 Family Advocacy Champion

Nick is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Nick will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

From a young age, Nick has been obsessed with Legos. He even had the chance to visit Legoland in Denmark with Make-A-Wish Foundation!

Nick was born with craniosynostosis, a brain disorder where the bones of his skull closed prematurely. Nick had his first surgery with Dr. Canady from University of Iowa Stead Family Children’s Hospital at six months old to separate the cranium bones and reconstruct his orbital bones, eye sockets and forehead. 

“Often times the surgery is more traumatic for the parents than for the infant or toddler who will have no recollection of the treatment in a few months,” Nick’s parents share. “Dr. Canady took extra time to answer numerous questions and calm our fears during our initial visits. He addressed the needs of our entire family and made us feel as though Nick was the most important patient in the world.”

When Nick turned 9, he was diagnosed with a malignant brain tumor and had to be immediately hospitalized. His brain swelling was so severe that he spent five days in the PICU on a high dose of intravenous steroids before even entering the operating room. This brave boy endured 33 radiation treatments over the span of 7 weeks.

Today, Nick is stable—thanks to the great medical team at University of Iowa Stead Family Children’s Hospital—and happily plays soccer and video game with his two big brothers!

Join us in welcoming Nick to 2019 Family Advocacy Day.


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