Kevin Baranowski and his wife, Nickie, were excited for the ultrasound appointment so they could learn if their baby was going to be a little boy or girl. They never could have anticipated what the ultrasound also revealed. Their baby had a fatal form of skeletal dysplasia, a syndrome that affects bone growth and in their son’s case, his rib cage. Weeks later, 90 minutes after he was born, little Luca John died in their arms. In their last moments with their baby, Kevin and Nickie promised him that he would help others — and that others would know his name.
The inspiration for the foundation came out of the Baranowskis’ own experience of the shock of the cost of burying their baby.
“We were a young couple just starting a family,” Kevin says. “We had a two-year-old at home, and my wife was a full-time stay-at- home mom. We didn’t realize how expensive things were.”
Fortunately for the Baranowski family, their church, St. Paul’s in Princeton, and the Mather Hodge funeral home, also in Princeton, donated funeral services and a burial plot. That experience gave them the idea for the Luca John Foundation. “It was that compassion that made us think about others who would find themselves in our situation,” Baranowski says.
In a matter of months after their baby’s death, the couple’s promise to Luca was fulfilled — Kevin and Nickie founded the Luca John Foundation. Their first event was a golf outing. With a mission to both support other families in affording funeral expenses for an infant, and eventually to fund research on a little-understood syndrome, they knew this was going to take many more events to make the difference they desired.
To date the foundation has been able to help with the funeral costs for more than 200 families in more than 30 states. Baranowski has spearheaded fundraising events across the country. Volunteers in Seattle, Virginia, Colorado, Florida, and elsewhere have run golf outings, 5K runs, and Dine for a Cause events. Princeton shops such as Alex and Ani and J. McLaughlin have held benefits.
The Baranowskis hail from South Jersey. They were high school sweethearts at Shawnee High School in Medford and attended Johnson & Wales in Providence, Rhode Island, together. There Kevin studied international business and Nickie studied travel and tourism, both graduating in 2002. Kevin, who grew up in Tabernacle, followed a similar path as his father, who also worked in telecommunications. His mother was a teacher’s aide. Nickie grew up in Medford. Her father was a sales leader for a Denver-based beef company and her mother was a dental hygienist.
The couple has lived in New Jersey almost their entire lives. Following college, they moved to Atlanta, Georgia, where Kevin worked at AT&T and Nickie became a stay-at-home mom. After Kevin was recruited to another telecom company in Manhattan, the couple moved to Plainsboro and then bought a house in Ewing.
Baranowski commuted four hours per day to and from his office in Manhattan for many years. The father of three school-age children — Brayden, age 9; Noah, age 6; and Lyla, age 4 — and solo operator of his family’s foundation, this put enormous strain on his family life.
“My moment of truth was at the end of November, 2013, when I was kissing my kids good night and realized I didn’t see them awake during the work week for three weeks straight,” Baranowski says. “To me, this was not the life I wanted to live. I didn’t want my kids growing up with me not being there, and this was just with me going to the office.”
His grueling schedule also made it challenging to run the foundation. While Baranowski hopes to have a full-time paid staff, right now he is running it solo with a small team of committed volunteers.
All things considered, Baranowski recalls, “at the end of last year, I made the decision that I needed to look for a new job.”
That change came this past July. He was recruited to a new position as channel development manager for Ciena, a Maryland-based, international tech company. He now works from his home in Ewing, a commute he jokes is “about two minutes, unless there is traffic on the stairs!”
His life at home has changed dramatically. He is able to do things that he was never able to do before, including make breakfast for his kids and help out with packing their lunch. “Most importantly,” he adds, “I am able to talk to them about their day when they get home; before I had about five minutes while we were rushing to put them to bed, or while they were falling asleep. There was a lack of both quality and quantity in that.”
Because of the additional time he has — and a greater peace of mind — Baranowski has been able to create significant growth over the last three months in his foundation work. “I can be much more effective with this change of lifestyle,” Baranowski says. “While I still put in long hours, I am able to have those hours work in a better way, because I am now local to my family. Before, it felt like I had a life in New York, and a life at home.”
Last month, he had time to meet with people in Congressman Rush Holt’s office to discuss the sometimes exploitative cost of funeral expenses some families face, as well as set up talks with other congresspeople about this issue. He also is working to create partnerships to help families at their greatest time of need and has set up meetings with social workers from leading hospitals in the area as well as New Jersey government officials toward this end.
With no truly national nonprofits that support families financially in the loss of their baby, the family’s mission is to make the Luca John Foundation national. Baranowski says their immediate goal is to have a fulltime paid staff by the end of 2015. Both his father, Kenneth Baranowski, and his father-in-law, John Flynn, are on the board of the foundation and provide business advice.
“I am lucky to have these two successful men as part of our leadership,” says Baranowski, who says he has gathered business acumen, too, from his career in global businesses (especially AT&T, a Fortune 50 company). The foundation is a member of the MIDJersey Chamber of Commerce, where Baranowski attends sessions specific to nonprofit organizations.
“I am a constant seeker of best practices and am not afraid to ask for advice or receive it,” he says. “With a desire to be the best at what we do, we need to know the good, bad, and ugly. We constantly seek feedback from our supporters as well as our grantees to ensure we are doing the best we can.”
One of the goals he is pursuing on the national level is a Health and Human Services guideline on funeral expenses for babies.
“Parents come to us with funeral bills averaging $1,500, but we see upwards of $10,000 or more from funeral homes,” Baranowski says. “I just think that’s unacceptable. Educating parents is key, but it also takes some mandates on what funeral homes should charge.”
For many families, the loss of their infant may be the family’s first experience in working with a funeral home. And while most funeral homes will take a family’s budget into consideration, “there are a few that will highlight more expensive options,” Baranowski says.
“As parents we never want to feel like we aren’t giving our children the best we can, so some parents often have a much higher bill than it should be. We can educate these families if they come to us earlier enough, but we also need to make sure that we put in place some guidance, from a government standpoint, on what funeral homes should charge.”
More than two dozen families have written moving testimonials about their experience with the Luca John foundation on GreatNonProfits.com, where the foundation has a five-star rating. A grandmother wrote about her daughter whose boyfriend left her when their baby received a similar diagnosis to the Baranowski’s baby. “The Luca John Foundation kept in contact with her and followed her condition and after care. They also took care of getting our precious little angel a head stone she probably still wouldn’t be able to have. My hearts and prayers go out to them and all the families they have helped and hopefully will continue to help. God Bless them.”
A mother wrote, “Losing a child is one of the most difficult things I have ever had to deal with. My husband and I were never able to afford a tombstone for my son’s grave. The people at the Luca John Foundation were generous enough to donate the stone. They also offered to connect me with people who have been in a similar situation. Knowing that I have people that I could talk to really was a big help. I will be forever grateful!”
In addition to helping more families who find themselves in this place of need, the foundation also has a medical research mission. Baranowski has set his sights high. Once funding is available, he would like to make his first $250,000 research grant. The grant would focus on finding a cure for the strain of the syndrome that took Luca’s life as well as enhancing the quality and length of life of those babies born with all types of this syndrome. One of his long-term dreams is to open a therapeutic farm — providing holistic support to help families heal after their loss.
When the Ewing couple had learned of their baby’s diagnosis, they did research, visited the leading medical institutions in the area, and called doctors across the country. They were unable to find a cure. They did, however, participate in a gene study that located the gene code for their son’s specific syndrome. This kind of study could lead researchers to identify the bone growth gene that causes all types of skeletal dysplasia. To date, genetic research for this syndrome has had limited attention. Baranowski’s hope is to change that reality, and the first step would be the foundation’s first medical grant. While Luca was the 31st known case in the United States for his syndrome, he was only one of the more than 28,000 infant deaths the year he was born. That is why the foundation has a two-pronged mission statement of funding medical research and helping parents with funeral expenses.
“We approach our work as being a help to those we can, and honoring those we can not,” Baranowski says.
Individuals who contact the foundation often receive not only financial assistance, but an understanding, listening ear. Relationships that Baranowski has built with hospitals, social workers, and affected families have allowed him to connect families who have lost an infant with families who have experienced this same loss but have had time for some healing.
“It’s one thing for a person to say, ‘you’re going to be okay’ to someone who loses an infant. But you hear it in an entirely different way from someone who has been in your shoes.”
While providing emotional support is not the primary mission of the foundation, it is an outcropping of the Baranowski family’s desire to assist grieving families in the ways that they are able, as well as a desire on the part of families who have benefited from the foundation to give back in some way.
“The work we’ve done is fostering a community of families who support each other,” Baranowski says. “The loss of a child is counter to the natural order of things. It is something that no parent, no grandparent, and no expecting parent can fathom. It is that change in the natural order that often leaves us in a silent void, a place where we find it hard to move forward.”
“For some of us,” he observes, “we need a light to show us that while we think we are alone in that silent void, we are not. There are others who are with us, but we may be blind to see it. The foundation prides itself on being that light — that community that says ‘You are not alone, we are here with you.’”