“As a parent, there’s nothing more terrifying than hearing your child has something wrong with their brain,” says Leeann, “It’s a helpless feeling.”
But Leeann and Jim Fitzpatrick have stayed remarkably strong since not just one, but two of their children have been diagnosed with Arnold-Chiari malformation, a brain condition in which the back of the brain extends into the neck. For their kids, this meant horrible headaches and problems balancing.
Leeann and Jim took their oldest son, Jacob, to Cincinnati Children’s when he was 18 months old after a fall. A brain scan revealed that he had Arnold-Chiari malformation and would need surgery. Two years later, their younger son, Dylan was diagnosed with the same condition. After a particularly trying day, Leeann and Jim decided they had to help make an impact.
“We needed to change the face of Arnold-Chiari. We wanted to provide a place for support where people could reach out and learn,” says Leeann. She and her husband then created the Neurosurgery Fitzpatrick Chiari Fund (NFCF). With this fund, they promote education, family guidance and support research at Cincinnati Children’s.
Every year, the group holds a Giving Hope fundraiser – their 5K Lei Fest. The funds raised during the 5K Lei Fest benefit the research, care and equipment in the department of neurosurgery at Cincinnati Children’s.
“Giving Hope is a great resource. We know that the program will help us with anything that we need.” Leeann and Jim use many of the Giving Hope tools and resources like change canisters, banners and balloons, and plan to create their own online fundraising page in the coming years.
The Fitzpatricks have been incredibly successful in providing more information and resources to families of children with Chiari malformations. Over the last three years, the run has raised over $24,000 to benefit Cincinnati Children’s. Their foundation has also raised enough to donate 25 iPads to the neurosurgery department, providing families with valuable information on Chiari.
The annual 5K Lei Fest takes place in June and is a night race. Register to run today!