Community helps family whose son has survived 16 years with brain tumor
For the DeFilippo family, the past 18 years have been a kind of miracle. And if friends and neighbors have their way, it will continue for years to come.
Luke, the family’s youngest of four boys, was about 2 when he was diagnosed with an inoperable brain tumor. Doctors predicted the child had up to two years to live. But they also gave the family a choice.
“We had to decide: Are we going to bring him home and let him live his short, little life in our arms and not do any intervention? Or do we try chemotherapy?” said Luke’s mother, Laura. “We prayed about it.”
They opted for treatment. More than 100 rounds of chemo and years later, Luke, now 18, is still very much with them. But the tumor, for which he undergoes treatment, has compromised his development. He is non-verbal, intellectually akin to an 11-month-old, and is the physical size of an 8-year-old boy, Laura said. But he’s very curious, very active, and, like a toddler, requires constant supervision.
“We think each day is a great blessing,” said Laura, who has devoted her time to caring for Luke in the family’s Audubon,
N.J., home. Rick DeFilippo, Luke’s dad, supports the family, working in computers. “I know it’s all in God’s time.”
In recent years, the DeFilippos started thinking that their home needed new accommodations — a space where Laura,
58, can do laundry or work in the kitchen but have Luke right beside her. A renovation would cost a lot of money, and money is tight in the one-income household. (Indeed, the three older DeFilippo boys— Aaron, 28; Caleb, 24; and Peter, 22 — have taken it upon themselves to fund their own higher educations.)
So, Laura said, she prayed again, then turned to neighbors and friends with a request.
“I said, ‘Would you guys want to walk along with me and help me try and figure out ways to raise money to make these accommodations?’” she said. “They jumped right on it.”
And thus in 2018 was born Room for Luke — a mission to raise the $120,000 needed to build an addition to the DeFilippo house, move the laundry up from the cellar, and install an accessible bathroom on the first floor.
Various folks have helped raise money through a GoFundMe drive, yard sales, flower sales, craft nights, and Avon sales. The Eagles organization has donated equipment for a sensoryfriendly therapy area for Luke, who receives some services at home; restaurants have donated to the building fund; and local architect Keith Kirsch has volunteered to design the renovation.
As word has spread about Room for Luke, people from neighboring towns also have joined the effort, which has so far raised about $45,000.
Neighbor and DeFilippo family friend Peggy SlackMcGovern has become the point person on the latest fundraising effort: a sale of unique cloth tote bags – handmade by volunteers – for a suggested donation of $10 each.
“Neighbors from Audubon and surrounding towns have responded to social media calls for help to sew the bags,” said Slack-McGovern, 70, a lawyer. “Many who can’t sew have volunteered to cut fabrics to sewing size so that we can provide no-contact, pre-cut material deliveries and pick-ups
to those who volunteer to sew. The public response on all levels has been wonderful.”
A number of local schools are helping to get the word out, she said, and area merchants have posted Room for Luke flyers to drum up support.
Longtime friends Cheryl Bortz, 72, a retired teacher, and Cathy Talarico, 72, a retired assistant bank manager, are two of the approximately 15 seamstresses. Before they started making the bags, they were sewing facemasks and donating them to seniors and others in need.
They aren’t surprised that Audubon is coming through for the DeFilippos.
“It’s just that kind of town,” said Bortz, who has
known the DeFilippos since Luke was a young boy.
For example, when Bortz’s parents became unable to navigate the front steps of their home, people from the town pitched in help construct a ramp for them.
Despite the efforts of these and other good Samaritans, the DeFilippos are still a long way from having enough funds to renovate their home. For now, they are managing as they always have: Luke receives special education remotely, through Archbishop Damiano School, and his brother Caleb is his athome education aide.
Thankfully, Luke’s tumor is stable for now and he regularly sees his doctors. As his mother said,
“He’s never going to be independent. I’m never going to be able to leave him. This is where we’re at.”
But as their community has stampeded forward to help, literally, make room for Luke, the DeFilippo family has experienced many joys.
“I just feel we’ve been blessed with these friends, and [are] making new friends along the way,” Laura said. “It’s a surprise that overflows my heart, that they are so happy to be helping us.”
And there is Luke, the miracle who has been defying odds for 18 years.
“I wouldn’t have done it any other way,” his mother said. “What a gift we’ve been given to have Luke in our lives.”