Rita Giordano The Philadelphia Investigator
Luke DeFilippo has beaten a lot of odds in his 20s.
Diagnosed with an inoperable brain tumor at the age of 2, he managed to survive despite a grim prognosis and serious physical and developmental problems. Non-verbal, his cognitive level is about 24 months. He never exceeded the height of an 8-year-old child.
In recent years, it has become more difficult for her family to manage her care in their Audubon home on many levels. So their community in Camden County rallied together, determined to raise funds to turn the residence into an accessible haven. The project – Room for Luke – received a huge boost when a group of area developers and contractors stepped up to take over construction and complete it for free.
Then last fall, the DeFilippos were dealt a terrible blow: a cancerous tumor was discovered near one of Luke’s kidneys. Her doctors said the cancer was incurable. No one knew if he would live long enough to enjoy the new spaces created for him.
But Luke once again thwarted the odds.
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The DeFilippos returned home about a month ago. On Friday, they opened 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.”
“He loves going out on the deck, and it’s also connected to his bedroom. So he takes advantage of this small space, this freedom of movement, ”said his mother.
For the DeFilippos, it’s a time of respite and gratitude amid the many challenges they still face.
Room for Luke was started four years ago by friends and neighbors of the DeFilippos 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 consisting of yard sales, flower sales, Avon, craft nights, volunteers sewing and selling tote bags and a drive GoFundMe. The Eagles organization donated equipment for a sensor-friendly therapy area for Luke, the restaurants donated a portion of their proceeds, and local architect Keith Kirsch offered 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 Mount Laurel’s historic Affordable Housing case, he decided it was worth doing.
Faith has taken the DeFilippo family very far.
So he turned to colleagues who agreed with him. One was Jim Williams, president of JH Williams Inc., a Moorestown-based development company that does big projects like the Ship Bottom Municipal Building. Williams offered his services as a project manager.
Edward Walters, a partner in the Walters Group, a South Jersey development company that often works on affordable housing, has also stepped up.
Suppliers and subcontractors have followed suit. A lot of labor and materials have been given to the effort. What was not given for free was provided at greatly reduced costs.
“What the project showed me is that there are good people out there who have skills and are willing to share those skills to help those in need,” O’Connor said. “I don’t think throughout the work we ever received a ‘no’ from anyone.”
In total, the fundraising efforts brought in approximately $100,000. During construction, family supports also helped house the DeFilippos in a rental property until the house was ready.
For the DeFilippos, having Luke all those years to himself was an unexpected gift.
When he was first diagnosed with his non-cancerous but inoperable brain tumour, they were given the choice of letting him die peacefully, probably within two years at most, or trying treatment. They opted for treatment. Over the years, Laura was his main carer while father Rick supported the family by working on the computers. Their three older boys funded their own further education. And Luke miraculously continued.
Luke’s cancer appears to have spread. A stain was detected in his lungs. But he seems unaware that there is something wrong.
“Luke is holding on,” said Peggy Slack-McGovern, a family friend who was the point person for much of the fundraising effort. “He has held up well to the radiation and is receiving chemotherapy in the form of pills. He still has no idea he’s not well, as he’s maintained his weight and is the same little guy he was before this latest diagnosis.
Luke’s cancer isn’t all the DeFilippos are dealing with.
Last year, Rick was diagnosed with dementia praecox. He has since stopped working. He now has short-term disability insurance, but the family hopes he can transition to long-term disability, a process Slack-McGovern, an attorney, is helping them through. They will also need health insurance when these run out.
“We take it one day at a time,” Laura said. “It’s been difficult for him. He’s at a point where he knows. But at the same time, he doesn’t have everything under control.
Sometimes, she said, Rick will say, “‘Boy, I gotta get back to work.'”
Because there is their renovated house to get used to. Luke has more space to move around and play safely, and his mother can now watch him from the kitchen. The laundry room has been moved upstairs. Their 100-year-old home now also has much-needed new windows and a new roof.
On Friday, the DeFilippos got a chance to show off all those improvements and thank the many people whose efforts, big and small, made Room for Luke happen.
And at the top of that gratitude list is Luke, their child defying the odds, always there to enjoy.
“Who knows how many days we have? I’ve said it before, Laura said. “But we’re here, and this is Luke’s house, and he knows it. He is able to be active. Luke’s room became Luke’s room. It’s just like I always say – God answered our prayers, and more.