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Toddler’s legacy: Fun that all can share

A push for barrier-free playgrounds

Joseph Nasto and Kate Cummings helped found Build Jake's Place, which is working with nonprofit Boundless Playgrounds.
Joseph Nasto and Kate Cummings helped found Build Jake's Place, which is working with nonprofit Boundless Playgrounds.Read moreJOHN COSTELLO / Inquirer Staff Photographer

The family and friends of Jake Cummings Nasto are throwing a big party in his honor tonight at Cooper River Park, and everyone is invited. There will be burgers and clowns and face-painting and - Jake's favorite - balloons, all near the playground, his main hangout.

"Jake would have loved this kind of party," said Kate Cummings, his mother.

Today would have been Jake's third birthday. The Pennsauken child died Oct. 21 from complications after surgery for a rare heart defect.

The people who loved him are inviting friends and strangers to this free event to celebrate Jake's life and get the word out about a project their sunny little boy would have enthusiastically approved.

They're going to build playgrounds - highly handicapped-accessible playgrounds where all kids can play together.

Late last year, the group formed Build Jake's Place, a New Jersey nonprofit that plans to work with Boundless Playgrounds, started by Amy Jaffe Barzach. Her son Jonathan was 9 months old when he died of a degenerative neuromuscular disease.

Barzach's nonprofit Connecticut group has helped create 129 super-inclusive playgrounds in 24 states, including one in Wilmington. It's not unusual for families to drive hours to visit a Boundless Playground, the group says.

"I think everyone has a choice in the midst of tragedy," Barzach said. "We chose to do what we thought would make Jonathan smile."

Playing with other children made Jake smile, too.

"He loved watching the other kids and trying to do what they did, even though he was always about 112 steps behind," said Cummings, 37, grinning at the memory. "It never bothered him. He was all about making people laugh."

For Jake, play could be a challenge. Born with hypoplastic left heart syndrome, he had only half a heart. Jake underwent about 20 operations in his brief life, including four open-heart procedures, his mother said. After his last heart surgery, he had two strokes.

Jake did physical, occupational and speech therapy every day. "He really worked hard," said his father, Joseph Nasto, 32.

To make it fun, Jake's parents took him to playgrounds. Camden County has several handicapped-accessible sites, including the one at Cooper River Park.

As much as he loved them, navigating even accessible playgrounds was a challenge. Smaller than average and easily winded, he had to put everything he had into navigating the steps at Cooper River, his dad recalled.

When Jake died, "we were pretty paralyzed by grief," said Jim Cummings, his grandfather. Jim Cummings and his wife, Lynn, are consultants to nonprofits and helped create Build Jake's Place.

Friends wanted to do something in Jake's memory, but his parents weren't ready, Jim Cummings said. The friends kept pushing.

Finally, "my daughter said, 'I'll do anything if I can build playgrounds for kids like Jake.' "

Boundless Playgrounds appealed to her because they are designed to allow children of all levels to interact.

They cost 10 percent to 20 percent more than conventional sites to build, said Dina Morris, spokeswoman for the organization. But they include features such as ramps that let every child reach the highest play decks, accessible pathways and surfacing, swing and bouncers with supportive backs, and elevated sand tables for children in walkers and wheelchairs.

Many incorporate "cozy spots," where all children can congregate but where kids with developmental disabilities, in particular, can go for a respite.

After Build Jake's Place was formed in the winter, its founders quietly started to get word out to friends. They also began planning a kickoff event, something low-key. They didn't count on the response they would get.

"I'm overwhelmed by the number of people who have said they were looking for a park like this," Kate Cummings said.

They haven't officially begun fund-raising, and they won't seek contributions tonight, but the family said it had already received thousands of dollars in donations. A family friend's son gave $1,000 - his bar mitzvah money.

Numerous businesses have provided food, entertainment and supplies for the party. About 300 people have registered on the Build Jake's Place Web site, saying they will attend.

The family knows it has a way to go. It estimates each playground will cost $300,000 to $500,000. It plans to seek grants, but based on his experience, Jim Cummings said most of the money would come from individuals.

Jake's relatives would like one playground to be at Children's Hospital of Philadelphia, where he was treated. But the first, they hope, will be in Camden County. The county Parks Department has expressed a willingness to work with them.

"What they're doing in his honor is amazing, and the response they're getting is just fantastic," county parks director Caren Fishman said.

If it succeeds, the group's playgrounds are likely to get a lot of use. According to Boundless Playgrounds, one in 10 children has a disability that makes playing on a traditional playground difficult or impossible.

Jake's family is still grieving.

"I don't wear makeup anymore because I cry every day," said Kate Cummings, who has another son, Terry Russell, 16, and is studying to become a nurse. Nasto recently lost his job with a traffic-information service when his employer's contract wasn't renewed.

But they have a mission.

"We're not about building a park in memory of Jake," his mother said. "We want to build a lot of parks, and we want kids to be able to play together in memory of Jake."

Tonight's party would have been right up Jake's alley, she said.

"He took on the world like he owned it," she said. "It was always his party wherever he went. He would have shown up, he would have cocked his head, and then he would have started to run things."

And he would have played.