Faith is carrying this South Jersey family as they deal with a pending heartbreak
People with good hearts heard about their initial need and rushed to help. No one could have expected the new challenges the family now faces.
Faith has brought the DeFilippo family very far.
When Luke, the youngest of four boys, was 2, he was diagnosed with an inoperable brain tumor. Although it was not malignant, his prognosis was bleak — doctors expected him to live just two years. His parents, Laura and Rick, prayed — and then chose to try chemotherapy to treat the tumor and possibly extend Luke’s life.
And year after year, despite severe physical and cognitive impairments (Luke is nonverbal, intellectually akin to a 24-month-old, and is the physical size of an 8-year-old) he has continued to survive. Today, at 19, he’s curious and laughs often. He’s also very active, and, like a toddler, requires constant supervision.
Prayers brought him this far, said his mom, 59. But now he needs them more than ever.
In October, a highly aggressive, cancerous tumor was discovered near Luke’s kidney. He is receiving treatment to improve his quality of life, but the DeFilippos have been told his disease is incurable.
That’s not the family’s only medical setback. Luke’s dad, also 59, the family’s main wage earner, has recently been diagnosed with early onset dementia.
The turn of events has dealt an unimagined blow to the family — Laura and Rick also have three older sons — which was the subject of an Inquirer article last December. The story chronicled a beautiful campaign being waged by the family’s Audubon, Camden County, community to help Laura DeFilippo care for her youngest son at home.
Laura has always been her son’s major caregiver. But as he moved through his teen years, it was becoming increasingly harder to manage him in their multilevel house. Their routines would be so much easier if the DeFilippos could build an addition onto the home, moving the laundry up from the cellar, and installing an accessible bathroom on the first floor so Laura could do her household chores on the same floor as Luke’s living and play space.
When Laura spoke of her need with a few close friends, they rallied the community, mounting various fund-raising efforts to remodel the DeFilippo home. They called the campaign Room for Luke.
Shortly after The Inquirer story about Room for Luke ran, the project got a big boost when some South Jersey development firms took over the building project, gratis. An army of subcontractors jumped on board, too, and donated materials and labor. To date, Room for Luke has raised more than $80,000 from compassionate donors, including a few benefactors who are helping pay for the apartment the DeFilippos rented in September when construction on their home entered its last phase.
But now, just as Room for Luke is nearing completion, Laura finds herself praying that her son lives long enough to get back into the house — and that she and Rick will be able to hang on to the house itself: Rick’s dementia diagnosis is forcing him onto disability, which will greatly reduce the couple’s income.
They will also lose the health insurance long associated with his work in computer technology (although Luke’s care, which is covered by Medicaid, will not be interrupted).
Said Laura: “I’m doing a lot of prayer.”
These new circumstances have only strengthened the community support that has carried the family during the Room for Luke campaign, said Peggy Slack-McGovern, 71, a family friend who has served as point person for much of the fund-raising.
“It has broadened the goals,” she said, as much more money now needs to be raised, to help the DeFilippos cover mortgage payments when their income plummets.
Laura is looking for an elder-care lawyer, social worker, or other appropriate advocate to help her learn about resources that might be available to her family. But her major focus has been on Luke’s treatment. He just finished a course of radiation and will soon undergo chemotherapy.
“To tell you the truth, I’m completely overwhelmed right now,” said Laura, who missed the recent wedding of one of her three other sons when Luke required hospitalization that day. “But I am also blessed by the people watching over us and caring for us, and I’m just trusting God, day by day.”
Her faith inspires others, said Slack-McGovern.
“When you’re faced with what she’s facing, you wonder if there will be some cracks. But they don’t seem to be there,” said Slack-McGovern. “I am amazed by her equanimity. Not that she’s taking this calmly, but she’s taking it so strongly.”
And faith continues to fuel the ongoing, grassroots efforts of friends and neighbors who have been helping to create a better environment for Laura to look after Luke. (On Saturday, Room for Luke will staff a fund-raising table at the Interfaith Caregivers Outdoor Winter Market in Haddonfield.)
Peter O’Connor, president and founder of Fair Share Housing Development, read about Luke and his family in The Inquirer. A public interest lawyer who was involved in the landmark Mount Laurel affordable-housing decision, O’Connor was touched by the DeFilippos’ plight and rallied others to the Room for Luke cause.
“It called out to you to stop what you were doing and get involved,” he said. “I knew the people I was asking would help — not one hasn’t agreed to help.”
One of those is Jim Williams, president of JH Williams Inc., a Moorestown-based development company he operates with his wife and sons. Large-scale projects are their norm (like the Shipbottom Municipal Building), but Williams gladly agreed to serve as project manager on Room for Luke.
“This project has restored my faith in the kindness of people,” he said.
Edward Walters, a partner in the Walters Group, a South Jersey development firm that does a lot of affordable housing, also was eager to help.
“All our [subcontractors] and suppliers have rallied around this effort,” Walters said. “It’s moving even faster than any of the other jobs we’re building, which is quite amazing. If we can get Luke in for his birthday” — Feb. 10 — “that will be good.”
Indeed, it would, said Laura.
“I hope Luke gets to live there for a while. I hope we all get to stay there. But I’m open to whatever the plans are that aren’t in my hands,” she said. “We’re taking things one day at a time, the way we always have. My friends are here. They’ve been helping, and God has been holding me up, too.”