By: Jillian Risberg
Faith. Family. Friends. For three decades, the Joey Bella Memorial Fund has been keeping families together through catastrophic illness.
It all began in 1986 when Joey was diagnosed with Acute Lymphatic Leukemia and family and friends stepped up to help raise money for a bone marrow transplant. Tragically, the little boy lost his battle before the transplant was even possible.
The Bella family wanted to turn their unimaginable grief into something positive and make a difference in the lives of other gravely ill children. That’s when they decided to establish the Fund.
“The kindness from complete strangers even all these years ago I can still remember; that was really a tremendous help,” says Joey’s father, Joe Bella. “It was the most impressive thing I’ve ever experienced in my life.”
The Fund pays temporary financial support above and beyond what the insurance can cover.
“We also provide guidance on getting reductions in cost such as utilities, rent, helping with different state and federal programs that are out there to make less burden on the family,” says JBMF vice president Dan Napolitano, of Denville.
The Fund installed a ramp in Marcella Taggart’s backyard when the family relocated to make it easier to get around for her daughter, Rebecca who has spina bifida and uses a wheelchair.
“They really helped with those expenses,” Marcella says. “We had a chair lift that had to be moved from our old house to the new house and nothing like that would be covered by insurance or Medicaid, so it was really a godsend.”
Since the Fund’s inception, they have supported about 50 families and they currently have six active families.
“We are the Fund of last resort,” Napolitano says. “Normally the family is in a financial state that they’re struggling to pay rent, keep their electric on, keep the telephones working.”
Anyone seeking help must first file a formal application with the board to verify income and financial requirements.
Each family’s situation is treated with respect and confidentiality. The need-based assistance program depends on the availability of funds. They don’t provide monetary grants directly to the families.
According to the JBMF VP, once they accept the family then the individuals must sign an agreement on what kind of assistance they require.
“We’re mainly structured for supporting costs like medical and doctor bills, transit to doctors, overnight stays,” he
says. We’ve even had a room built specifically for a family’s needs.”
Rebecca also has other health issues to contend with.
“About 95 percent of people with spina bifida develop hydrocephalus because they have a bony malformation in the skull and it affects the flow of the cerebral spinal fluid,” Marcella says. “Nearly all these kids end up having a shunt put in and it saves their lives, but the shunts often fail.”
In 2018, the 24-year-old was in and out of New York City related to a shunt failure after not being properly diagnosed for some time.
“We had to go over the George Washington — all those tolls, buying a meal while we were there and then she was hospitalized a couple of times that month,” Marcella says. “It’s very difficult because I can’t work when Rebecca has major things going on, so Dan and the Fund really helped.”
They also respect the privacy of the families, which Napolitano says is very unique.
“We don’t require them to ever broadcast that they are part of the Fund,” he says. “It’s really between them and our board, and we sign nondisclosure agreements.”
And they take that privacy very seriously. It’s up to the individual families if they choose to talk openly. It was set up that way because of the Bella family.
“Basically we’re gonna give you support but you’re going to have to be part of every pamphlet and have your picture taken,” Napolitano says. “In the worst most catastrophic times it’s hard to consider having my picture on a billboard somewhere.”
They hold two major fundraisers per year, including the Tricky Tray on July 2 at Gardner Field and on July 3 there’s Band, Beer and Beefsteak. All proceeds help families in Denville and the surrounding areas.
It wouldn’t be possible without the generous donations from friends, sponsors and help from volunteers (concerned members of the community) — according to Napolitano.
“At $60 a ticket it’s not cheap,” he says. “Such a show from all those who are helping families they don’t even know.”
According to Bella, every year during the BBB event he is overcome with emotion.
“Just to see everybody there and having a good time means so much to me and my family,” he says, of the yearly outpouring for Joey and other children suffering deadly diseases.
He calls Joey a good boy and a really special kid.
“He liked the Yankees and to go out hiking and walk in the woods,” his father says. “He was always there helping me when I needed help raking or something.”
Bella says despite the passage of time, he can remember in great detail many things that happened and it’s burned into his memory.
Like when the five-year-old got a bone marrow biopsy the first time they went down to Children’s Hospital (of Philadelphia).
“They put that needle in your hip bone and it’s excruciating. I know adults who say it’s one of the worst things they’ve ever had,” Bella says. “My wife was just sobbing and Joey stopped crying and put his arm around her.”
Looking back on the past 30 years, Napolitano says often families only stayed briefly in the Fund because tragically, the child would pass.
“Now, with the amazing advancements in medicine, we keep the families a lot longer,” he says.
He says the majority of their support comes from Denville, but they are hoping to expand in the next few years.
According to Napolitano, he went from a kid who loved those beefsteaks to an adult who wants to make the world a better place.
“Having this fund is the most incredible outlet to do that,” he says. “Hearing the dire straits of some of these families that really don’t know where else to go.”
Napolitano says it’s a constant struggle and a lot of times the Fund has to advocate on their behalf when they have past due bills and work with collectors.
“Because of our scope and the number of volunteers that we have, we’re very limited,” he says. “But if anyone ever has any questions or is undergoing a catastrophic situation, we would certainly love to talk to them.”
They’ve been grappling with how to reach people who may not know about the Fund and make sure families learn about the resources available.
According to Napolitano, a group called Band+Aid on Broadway popped up after Hurricane Irene to support businesses in Denville with musical performances and a triathlon. For the past several years, the same group has donated all the proceeds from the triathlon, which equates to $30K a year to the JBMF.
“The whole thing goes directly to the families,” he says, adding that the best part about his job is to see the relief on their faces when they know that they’re not in this alone.
Napolitano helps the Taggart family of Rockaway.
“I’ll meet with them once a month, collect their bills, talk to them about how their loved one is doing. It’s a drop in the ocean of what can be done,” he says. “It doesn’t erase the illness, but at least it’s someone there to help.”
And the board itself personally donates to the Fund.
“One of the routine things we do is buy the biggest gift at the Tricky Tray to give away,” he says. “That’s all donations from the board; so people not only give their time, they’re giving their money as well.”
After a stint in the army supporting a community in Baghdad, Napolitano attended town hall meetings with an interpreter and with funds they had built a community center for the locals. Seeing their appreciation was life changing for the combat engineer.
“You learn what you want to do and how you can help,” he says. “Applying what your mother taught you about being moral and ethical can really make a difference.”
He says that everyone involved with JBMF wants to continue that.
“It isn’t our first time. A lot of us have a personal experience in assisting someone somewhere in life,” Napolitano says.
Whether Bella is with Napolitano, supporting the Fund as a board member or out on the field, people always say, ’That’s Joey’s father.’
“Even to this day, you can see that compassion in people; it’s really amazing,” Bella says. “I have a different perspective on life than most people.”