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More than a decade ago, John Weller faced medical complications that not only threatened his life but also changed his career path. Through the organization Freedom Waters Foundation, he and co-founder Debra Frenkel provide children facing life-threatening illnesses and their families with boating excursions.
In 2006, the cancer in John Weller’s neck began spreading to his brain and intestines. His sickness, high-grade neuroendocrine carcinoma, was immune to chemotherapy and caused the yacht broker to lose 16 inches of his intestines.
During Weller’s frequent hospitalizations, he became inspired by the children he saw battling cancer. It broke his heart when a kid with a bald head rolled his or her chemo trolley up and down the hallway. “I knew I needed to do something for these kids and vowed when I kicked cancer I would make a difference in their lives,” Weller says.
Weller paired with his friend and social worker, Debra Frenkel, to create Freedom Waters Foundation, a non-profit dedicated to taking out kids with cancer and other life-threatening illnesses for an afternoon of boating. Weller, who spent more than 30 years in the yachting industry, pulled his connections in order to recruit boat owners, while Frenkel used her resources to find children and families experiencing difficult times.
For Frenkel, helping to found the organization was as much a calling as it was a risk. “It was a strong push from deep within my soul, [but] it was scary, with only $1,000 in the bank and no knowledge of what or how to set up a non-profit,” she says. Now in its 10th year, Freedom Waters Foundation has provided more than 10,000 water experiences for families.
On a Sunday during the summer in Jupiter, boat owners Michael and Patty Pearce, along with their daughter Amber Pearce, who is a cancer survivor, volunteered their boat and time to host two families for a three-hour Intracoastal cruise. “Having a child [who] had cancer, I saw what people did for us, and if we can make a kid have an easier time, it’s invaluable,” Patty Pearce says. “We love bringing families on the water and experiencing something many never have.”
Freedom Waters Foundation outings are a favorite activity for Veta Smart, a 4-year-old diagnosed with acute lymphoblastic leukemia. She loves being on the water and even getting to drive the boat. “Freedom Waters Foundation means a lot to us because our diagnosis made the simple things exciting and the exciting things breathtaking, like these boat trips,” says Veta’s mom, Joan Mills.
Also on board was the Vanni family, spending time in Jupiter while 2-year-old Luke Vanni undergoes treatment at the Paley Institute at St. Mary’s Medical Center. The process requires Luke’s mother, Summer Vanni, to stay in Jupiter with the family’s three young boys while her husband, Michael Vanni, continues working in Virginia, where the family is from. “The boys so enjoyed being on a boat and meeting new friends,” Summer Vanni says. “We feel very privileged that we got to be a part of this wonderful, meaningful cause.”
Excursions take place on private boats, which accommodate one to two families, or on yachts, such as the Mariner III, a 122-foot classic motor yacht. “We make a difference in families’ lives at a tough time,” Weller says. “When they get off the boat, everyone has a huge smile on their face, and that makes it all worthwhile.”
As for Weller, he’s currently in remission, but he will continue to receive brain scans every six months in the event his cancer returns. It’s this first-hand understanding of what each child is facing that inspires Weller to continue providing them with an escape from the realities of their illnesses, even if it’s just for a few hours. “Their lives are filled with chemotherapy, surgeries, needles and the confines of a hospital,” Weller says. “To just breathe the fresh air, watch the children laugh, play and get a chance to be a kid away from the hospital environment is absolutely priceless.”
Additional information about Freedom Waters Foundation can be found at freedomwatersfoundation.org.