Luke DeFilippo has overcome a lot of odds in his 20 years.
Diagnosed with an inoperable brain tumor when he was 2, he managed to survive despite a bleak prognosis and severe physical and developmental challenges. Nonverbal with a cognitive level of about 24 months, he never grew beyond the size of an 8 year old.
In recent years, it became more difficult for his family to manage his care in their multilevel Audubon, N.J., home. So their tight-knit South Jersey community rallied, determined to raise the funds to turn the residence into an accessible haven. The project — Room for Luke — got a huge boost when a cadre of area developers and contractors stepped up to take over the construction and see it through for free.
Then last fall, the DeFilippos were dealt a terrible blow: a cancerous tumor was discovered near one of Luke’s kidneys. His doctors said the cancer was incurable. No one knew if he would live long enough to enjoy the new spaces being created for him.
But Luke beat the odds once more.
The DeFilippos moved back home about a month ago.On June 10, they’ll open their doors to thank the many people who made Room for Luke a reality.
“It’s beautiful,” said Laura DeFilippo, Luke’s mother. “We’re just starting to feel like our feet are touching the ground now.”
That goes for Luke, too.
“He loves to go out onto the deck, and it’s also connected to his bedroom. So he’s enjoying that little space, that freedom of movement,” his mother said.
For the DeFilippos, this is a time of respite and gratitude amid many challenges they still face.
Room for Luke was started four years ago by the DeFilippos’ friends and neighbors who decided to help renovate their home into a place that met the family’s caregiving needs.
It was a true South Jersey grassroots effort of yard sales, flower sales, Avon, craft nights, volunteers sewing and selling tote bags, and a GoFundMe Drive. The Eagles organization donated equipment for a sensor-friendly therapy area for Luke, restaurants donated some of their proceeds, and local architect Keith Kirsch volunteered his design services.
Then last year public interest lawyer Peter O’Connor, president and founder of Fair Share Housing Development, read about Luke and his family in The Inquirer. One of the leading figures in the landmark Mount Laurel affording-housing case, he decided this was something worth taking on.
So he turned to some colleagues who agreed with him. One was Jim Williams, president of JH Williams Inc., a Moorestown-based development company that does large projects like the Shipbottom Municipal Building. Williams volunteered his services as project manager.
Edward Walters, a partner in the Walters Group, a South Jersey development firm that often works on affordable housing, stepped up, too.
Suppliers and subcontractors followed suit. Lots of labor and materials were donated to the effort. What wasn’t given gratis was supplied at way reduced costs.
“What the project demonstrated to me is there are good people who have skills and are willing to share those skills to help people in need,” O’Connor said. “I don’t think throughout the entire job we ever got a ‘no’ from anyone.”
All told, the fund-raising efforts brought in about $100,000. During the construction, family supporters helped house the DeFilippos in a rental property until the house was ready.
For the DeFilippos, having Luke all these years itself was an unexpected gift.
When he was first diagnosed with his noncancerous but inoperable brain tumor, they were given the choice of letting him die peacefully, probably within two years at most, or try treatment. They opted for treatment. Over the years, Laura was his main caregiver while father Rick supported the family by working in computers. Their three older boys funded their own continuing education. And Luke miraculously kept on.
Luke’s cancer appears to have spread. A spot was detected in his lungs. But he seems unaware that there is anything wrong.
“Luke is holding his own,” said Peggy Slack-McGovern, a family friend who was the point person for much of the fund-raising efforts. “He did well with radiation and is receiving chemo in pill form. He continues to have no idea that he’s not well, as he has maintained his weight and is the same little guy he was before this latest diagnosis.”
Luke’s cancer isn’t all the DeFilippos are faced with.
Last year, Rick was diagnosed with early onset dementia. He has since stopped working. He’s now on short-term disability insurance, but the family is hoping he can transition to long-term disability, a process that Slack-McGovern, a lawyer, is helping them navigate. They will need health insurance as well when the temporary ones they have run out.
“We’re taking it one day at a time,” Laura said. “This has been hard for him. He’s at a point where he knows. But at the same time, he doesn’t have a grasp on everything.”
Sometimes, she said, Rick will say, “‘Boy, I need to get back to work.’”
In their revamped home, Luke has more room to safely move about and play, and his mother can observe him from the kitchen now. The laundry has been moved upstairs. Their 100-year-house now has much-needed new windows and a new roof.
Friday, the DeFilippos get a chance to show off all those improvements and thank the many people whose efforts, large and small, made Room for Luke happen.
And high on that gratitude list is Luke, their odds-defying child, still there to enjoy it.
“Who knows how many days we have? I’ve said that before,” said Laura. “But we’re here, and this is Luke’s house, and he knows it. He’s able to be active. Room for Luke has become room for Luke. It’s just been as I always say — God has answered our prayers, and then some.”