Nonprofit Emmy Lights the Way empowers children with adaptive equipment

For the first time, 12-year-old Daniel Cavanaugh spent his summer doing what had previously seemed impossible — riding a bike.

The Oceanside boy's brand-new bicycle — or rather an adaptive tricycle outfitted with safety features like foot straps and seat belts — arrived in his driveway in June, courtesy of Emmy Lights the Way. The nonprofit provides children like Daniel, who live with physical mobility challenges, special equipment that helps them exercise, gain independence and share experiences with siblings or friends they otherwise couldn't. In June, Daniel's mother, Marie Morrissey, cried as she thanked the nonprofit’s founder, Lauren Wondsel, of Plainview, for understanding the challenges of raising a child like hers and for securing the funds to make a difference.

"It means so much to us," Morrissey told Wondsel outside the family's home as Daniel tried out his new bike.

"It makes me so happy to see him so happy and you so happy," Wondsel said, embracing Morrisey.

Contrasting care

Wondsel, 37, told Newsday her middle child, Emerson, now 5, was born prematurely and with spastic quadriplegic cerebral palsy. After receiving Emerson’s diagnosis, Wondsel said she soon noticed the "stark contrast" between the ease of access to support and services for her firstborn, Henry, 6, and her second child.

"I could not believe how difficult it was to just get Emerson things that she needs, like equipment for her to be able to experience the world just like her able-bodied brother," she said. While insurance companies pay for some needs, coverage gaps mean parents already grappling with medical bills struggle to save for specialty bikes, strollers and other items that can cost thousands of dollars. 

That discrepancy sparked Wondsel's interest in helping parents facing similar circumstances but with limited financial resources.

The 501-C3 nonprofit, which started in August of last year, has raised about $30,000 through private donations in its first year, Wondsel said. It takes applications on a rolling basis (available on the organization's website, emmylightstheway.org) and orders specific equipment for successful applicants, who could be parents, teachers, caregivers or anyone who knows a child in need. She purchases adaptive bikes, booster seats and jogging strollers from Adaptive Mall, an online retailer, or even directly from manufacturers.

"When you actually bypass insurance, it's that easy," Wondsel said. "The goal is to make it as low-lift as possible. Parents who have children with physical disabilities or medical complexities could have a second full-time job, on hold with insurance and jumping through all the hoops."

'Alone and unseen'

Daniel needed the special tricycle because he had trouble maintaining his balance on a traditional two-wheel bike, Morrisey said. The part of his brain that controls movement is underdeveloped , a condition known as  cerebellar vermis hypoplasia .

"When you're a parent of a kid with special needs, it's very isolating, and there's a lot of reasons every day that you feel alone and unseen," Morrissey said. "When you find an organization like Emmy Lights the Way, you don't feel as alone in this whole process."

For Daniel, the special bike allows him to ride alongside Nora, his 9-year-old sister.

"Oh my God, Daniel, can you believe this?" Morrissey, 46, asked her son, who shook his head in disbelief upon receiving the gift. "You’re going to be cruising down the street."

But before he could take it for a test drive, he had one important request for his father, Christopher Cavanaugh, 44: "I can't forget my helmet, Daddy."

An adaptive bike like Daniel's can cost between $3,000 and $8,000 "depending on the type of supports the child needs," Wondsel said.

Emerson received some equipment and care through the New York State Department of Health's Early Intervention Program, which helps families with children with disabilities before their third birthday. Wondsel said that when Emerson turned 3, she was "at the mercy of insurance."

Limits of insurance

"We just got her first wheelchair, and thankfully, that was covered by insurance, but insurance only covers one thing with wheels every five years," Wondsel said. "Really big shocker, kids grow really quickly, so five years isn't usually super sustainable. … Emerson has private insurance, and then she has Medicaid secondary — she has two insurances — and most things are still not covered. We have purchased so many pieces of equipment out-of-pocket, and they're just incredibly expensive."

Among those out-of-pocket purchases was a medical jogger that has allowed Emerson to participate in an annual 5k alongside her family, which includes her younger sister, Louise, 2, and their father, Tom Wondsel, 39, as well as join them for hikes on rough terrain. The Wondsels also bought a special seat with a harness that can keep Emerson secure on an adaptive swing and on the family’s boat.

She even ventured to the South Fork after a Facebook group dedicated to parents of children with disabilities led her to a used bathing chair she purchased so her daughter could feel the sand between her toes at the beach.

Last month, Lauren Wondsel said she and her board were reviewing a half-dozen applications, including one they approved for a teenage girl in Illinois. She hopes that in its second year, the nonprofit can raise enough funds to approve multiple applications it receives from across the nation each month. 

Since kids grow so fast, Wondsel also hopes to start a lending library arm of the organization to that will allow parents to either try out or lease used equipment so she can help even more people with limited donated funds. But she has to balance that objective, as well as any others, with her full-time job  and her own family.

The nonprofit, Wondsel said, is "what I’m most passionate about." It's also allowed her to meet other "people who get it."

"There's definitely a little bit of grief in there still," Wondsel said. "But this has kind of turned that into something productive, where I can help and give back to other families."