BY KATHY CHANG
Staff Writer
KATHY CHANG Patti DeVito will run the Mayor’s Midnight Sun Marathon in Achorage, Alaska, on June 17 to raise money for neurofibromatosis (NF). DeVito (l) met Courtney Walsh, who has NF1, a year ago through her daughter. Running marathons was not Patti DeVito’s thing, until she met 16-year-old Courtney Walsh about a year ago.
“When I think about Courtney and the other people who live with their disabilities, it gives me the inspiration to run,” said DeVito.
The Metuchen High School sophomore has neurofibromatosis, which has left her blind in her left eye and partially blind in her right eye.
Their meeting spawned a friendship and prompted DeVito to do more to raise awareness about NF. So she decided to run.
DeVito had already done some fundraising for the Children’s Tumor Foundation through the nonprofit’s annual May Tea Party. But someone at a CTF meeting two years ago challenged DeVito to run a marathon for the charity.
She’s still running. She heads to Alaska next month to run in the Mayor’s Midnight Sun Marathon in Anchorage on June 17.
“NF is like Alaska,” said DeVito. “It’s vast. It’s America’s frontier. NF is like that. You know it’s out there, but you don’t know much about it.”
The Children’s Tumor Foundation is the leading nonprofit organization dedicated to finding a cure and treatments for NF. The foundation spends over 75 percent of all funds raised on research, medical programs, public education and support services.
DeVito met Walsh a year ago through her 15-year-old daughter, Ali. Walsh suffers from the most common form of NF called NF1.
“It seemed like a crazy coincidence,” said DeVito. “I had been working an NF-related fundraiser, the May Tea Party for NF, for five years for my dear friend, Bernadette Tardio, who has NF2.”
NF1 limits Walsh’s vision and she has a learning disability.
“When I was 18 months old, I was diagnosed with a brain tumor,” she said. “I am completely blind in my left eye and partially blind in my right.”
There are three distinct types of neurofibromatosis – NF1, NF2 and schwannomatosis. They are a set of distinct genetic disorders.
All forms of NF can occur spontaneously from a genetic mutation, or can be inherited. A parent with NF has a 50 percent chance of passing the disorder on to their children.
The disease did not run in Walsh’s family.
“We never heard of it before,” said Kathy Walsh, Courtney’s mother.
NF1 can strike in 1 in 4,000 births. Its severity can range from caf au lait spots, which Courtney has, bone abnormalities, multiple skin fibromas, disfigurement, and brain and spinal tumors.
“It can lead to a variety of serious complications, including blindness, deafness, loss of limbs, disfigurement, chronic pain, cardiovascular defects, and cancer,” DeVito said.
Walsh is a typical 16-year-old, despite her illness.
“I like to talk on the phone,” said Walsh. “My favorite subject in school is English, I would like gym if I didn’t have to change for it, I like to hang out with my friends, listen to music and take piano lessons.”
Walsh collaborated with her high school teacher, Paula Greene, this year to raise money for NF research at the school.
“We had a bake sale and raised $122.86,” said Walsh.
Walsh has been taking weekly piano lessons from the Westerhoff School of Music and Art for six years.
“She plays everything by ear,” said Kathy. “Her piano teacher teaches her step by step.”
Because of her vision impairment, Courtney’s other senses are highly developed, said her mother.
“If a dollar falls down the street, she can hear it,” she said. “Her listening and smelling skills are very good.”
Five years ago, DeVito had never heard of NF and never ran a marathon.
Now, she is the chairperson for the May Tea Party for NF, has a half-marathon under her belt and will run two full marathons before the end of June.
“I love what Patti is doing,” said Walsh. “She is helping us reach the last frontier in NF research.”
Courtney planned to attend the May Tea Party on May 7 at the North Maple Inn in Basking Ridge, where she was to play the piano for the guests at the annual fundraiser.
Both the party and the foundation are important to Walsh.
“We can all work together to help find a cure,” she said.
For more information about the NF Marathon Team and DeVito’s run, visit www.firstgiving.com/racingforNFResearch.
The May Tea Party has raised roughly $115,000 over the last four years. Last year the event raised $40,000.
For more information about the Children’s Tumor Foundation and the May Tea Party visit www.ctf.org.