BY LINDA MARX
The Brandon Merritt Charitable Foundation was created by this young man’s family to honor his memory and help others fight a deadly disease.
Brandon Merritt was curious about adventure, loved the outdoors and sports—especially the Boston Red Sox—and had an overwhelming appreciation for the simple pleasures in life. He was known as a “Gentle Giant”—a person who had limitless love for people, turtles and Cooper, his pet dog. He had an old soul for a young man, and his spirit was intoxicating to those around him. He was born June 19, 1988, but eight months later was diagnosed with Neurofibromatosis (NF), a disease whereby tumors develop on nerve endings throughout the body, targeting the nervous system.
“Brandon didn’t have a lot of symptoms at first,” says his mother, Debbie Merritt, executive director of B The Difference, a nonprofit organization the family founded in order to honor his memory, help others afflicted with this disease, and provide funding to medical research organizations dedicated to finding a cure. “But he had the necessary surgeries to remove tumors from his nerve endings.”
By age 13, his symptoms had slowed, and he was able to enjoy his life although the disease compromised his ability to play sports and interact with children his age. All the while Brandon, who recited sports statistics like he was reading a phone book, never complained or asked, “Why me?” And he always had a smile on his face. “If anything,” says his mom,” the physical disabilities allowed his personality to become incredibly nurturing and sensitive.”
His cousin Koby Cohen agrees that Brandon was never depressed and always looked on the bright side of anything he was battling: “No matter who you talk to that knew Brandon, they would say he was an amazing human being. He has had a major impact on my life.”
While Brandon lived much of the year with his family in Fort Lauderdale, he also spent time in Vail Valley, Colorado, where he enjoyed snowboarding, bike riding and working successfully in guest services at Beaver Creek resorts in winter and two golf clubs, The Club at Cordillera and Sonnenalp in summer. He had tried working in Fort Lauderdale, but on days that he wasn’t perfectly punctual due to his NF, his bosses had others take over his job. It was as disheartening to him as the hot and humid South Florida weather.
Brandon eventually found his bliss in Colorado. “While Brandon had some attention difficulty, the employers in Colorado allowed him to succeed at his jobs and take breaks when he needed them,” Merritt says. “He had trouble keeping track of time—like he would take longer than allowed for lunch breaks, or forget to cook dinner until 11 p.m. But most often, things were okay, and his colleagues accepted and loved him, referring to Brandon by the nickname ‘B.’”
Tragically, as Brandon got older, doctors couldn’t operate on all of his tumors because of their tricky locations. For example, he had one tumor by an auditory nerve that wrapped around an artery and was inoperable. Before the family figured out what to do about it, Brandon passed away in his sleep on February 2, 2011, at the age of 22. In the days following, “B” snow sculptures appeared around the mountain, hand-carved by his grieving Colorado colleagues.
In order to deal with their own grief and to keep Brandon’s memory alive in their minds, his two older sisters, Stephanie Johnson, now 34, and Jessica Roberts, 32, quickly started B The Difference, trademarking the name. Soon, running the charity became a family affair.
“Our whole family has always been very close and the most important thing in my life,” Merritt says. “When Brandon died, I still had a husband and two daughters that I loved very much. Brandon’s passing brought us even closer together, and for that I am forever grateful. B The Difference fills the void that Brandon left behind.”
The charity got its name because it was designed to be the difference in the lives of others afflicted with NF. “B” was used instead of “Be” to honor Brandon’s nickname, and to attract attention to the organization. “Brandon was lucky enough to be given diversions from his life with NF, and it didn’t take much for all of those who knew him to see how important those diversions were to him and to our family,” Merritt says. “Our mission is to bring this happiness to other individuals and their families through our B Happy program.”
For example, B Happy provides an all-expense paid vacation of a lifetime to places that Brandon loved like Miami, Tampa, Clearwater, Denver, Vail Valley and Boston. A volunteer acts as a tour guide on these five-day trips, and to date the charity has sponsored 46 of them. “Words can not fully express what this trip meant for our family,” says Melinda Tibbits, the mother of Nathan, who suffers from NF and had a wonderful time on his trip. “It has been hard to find things Nathan and the family can enjoy together that does not cost an arm and a leg. We have to penny pinch everything, due to the medical and financial stresses. To have a Tampa-Clearwater trip completely paid for this past summer around Nathan and all that he loves without the worry of how to pay for it was amazing.” B Happy recipient Aaron Sullivan was also thrilled to take a trip to Boston in 2017 where he was able to be himself. “I didn’t worry about my disorder or how I talk,” says Aaron. “I got to try new experiences and check things off of my bucket list. We had time as a family without stress. I saw my dad laugh. I really liked that.”
For patient Stephanie Gamble Phelps, the Colorado trip allowed her to realize just what she could do. “I was pretty depressed after getting so much bad news with this disease,” she says. “I kept thinking my life was over. All I could see were the cannots. This trip showed me, ‘Yes I can’. It really changed my mindset, and I will forever be grateful. It reminded me that being sick wasn’t the end of my life.”
The first B The Difference fundraiser was a scavenger hunt held on a mountain in April 2012. The charity raised $15,000, which Merritt says went into a medical research fund. Throughout each year, the charity’s board meets regularly, and then hosts an annual fundraiser where food, wine and liquor are donated. There is a live auction and dinner during the event and everyone has a fun time. “Cheers to Be”, the 2020 fundraiser, will be held in Dania on April 18 with a live artist, Patricia Beltran of Weston coming to paint. Last year, the event hosted an interactive roving photo booth. “We do something different each year to generate interest,” Merritt says. To date, the charity, through this annual gala and constant fundraising, has raised more than $800,000 for research and B Happy recipients. All of the proceeds are donated to the charity except for overhead costs like insurance liability for the event, and the trip expenses. “We are a feel good charity, and in the future we want to expand and raise awareness of this disease,” Merritt says. “Working full time on the charity is overwhelmingly gratifying for me. I wish Brandon were here but life happens. You can choose to lay down or choose to live. We chose to live, and that has given us direction.”
There are three kinds of NF: NF1 (Brandon’s affliction and the most common), NF2 (mostly hereditary) and Schwannomatosis (very rare). NF is more prevalent than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease. It can occur both spontaneously or genetically, and affects one in 3,000 + births, according to the Children’s Tumor Foundation. The disease afflicts people worldwide, of both genders, and has no racial, geographic or ethnic bias.
NF of all types causes tumors to grow anywhere in the body. The disease can lead to blindness, bone abnormalities, deafness, disfigurement, learning disabilities, disabling pain, even cancer. The NF Network, a not-for-profit organization established in 1988 by a group of people who were in some way affected by the disease, seeks to help those families who wake up to daily frustrations. The NF Network is the leading national organization advocating for federal funding for NF research and building and supporting NF communities. Its goal is to eradicate the health issues, pain, isolation and uncertainty caused by an NF diagnosis, and also works with local NF organizations to share experiences.