Fundraising Walk For Tumor-Causing Disorder Planned In Westbury

WESBURY, NY — A fundraising walk is planned next month in Westbury to support a nonprofit dedicated to funding research to treat a rare, incurable genetic disorder that causes tumors to grow on nerves throughout the body.

The Shine A Light NF Walk is scheduled to take place Sept. 14 at Eisenhower Park. Those interested in participating can register as an individual, join a team, or start their own team. So far, teams have raised about $16,000 out of a $35,000 goal.

Money benefits the Children's Tumor Foundation, which is dedicated to ending Neurofibromatosis, or NF.

People with the genetic disorder often develop multiple benign tumors on their nerves and skin, and their skin often shows abnormal spots, according to the National Organization for Rare Disorders. This includes pale tan or light brown discolorations, or as walk organizer Cristina Picarello calls them, cafe-au-lait spots.

Picarello's 7-year-old son Nicky was diagnosed with NF when he was just 3 months old. When massive birthmarks appeared under his armpits, she knew something was wrong.

"They started popping up all over his body," she told Patch on Tuesday. "On a baby, they seem so big."

Initially she thought it might've been just a bad rash. Doctors confirmed it was something much worse.

"It was very, very difficult," Picarello said. "If you Google it, it's horrible. It's upsetting. You don’t know what's going to happen. It took us awhile to get over it."

The tumors can go grow on the eyes. It can cause an unusually large head size, stunted height, seizures, learning disabilities, scoliosis, bowed legs, and more. In rare cases, some people can develop cancerous tumors.

For Nicky, NF a cluster of painful and discomforting tumors formed on his lower back. He also has recurrent benign granuloma growth of both ears, three sets of Eustachian Tubes, and continued growth and bleeding. He faces bone surgery and has to go to feeding therapy five days a week.

"It affects his whole life," said Picarello." It affects his eyes. Spine. Growth. He's a peanut. He’s super small — not even on the height chart."

Five years ago, they found the walk and met other kids and parents going through the same thing.

"It was an amazing experience," she said.

Kids donning capes received medals and got to see their pictures laid out across the walk

"They felt like heroes for the day," she said.

The disorder affects one in every 3,000 people. Made up of 40 friends and family members, Team Nicky 2019 has raised about $550 for the event this year. You can donate to the cause on the Team Nicky website. They'll be easy to spot this year, too. Just look for people with elephants on their T-shirts.

"He loves rainbows and elephants," Picarello said.