STOW — In the six years since she was diagnosed with Usher syndrome, 14-year-old Bella Dunning has heard all the things she shouldn’t be able to do because of the rare genetic disorder. Born with profound hearing loss and balance problems, she wears tinted glasses to protect her gradually deteriorating vision, which doctors warn she may lose entirely.
Dunning, however, insists on focusing on all the things she can do — and does well. With double cochlear implants, she hears and speaks nearly as well as anyone else. She loves reading and listening to music, especially Adele and Taylor Swift, and attends eighth grade at R.J. Grey Junior High School in Acton.
Nor has she allowed her balance issues to keep her from dance classes, bicycling, or her greatest passion — horseback riding.
“I feel like I have a connection to horses. I know how to control them, but I honestly think they’re more gentle with me than other people,” she said. “I love to be around them because I can put away my anxieties and worries, and just be myself and have fun. Riding makes me feel happy, like I’m on top of the world.”
Dunning rides five to six days a week at Red Acre Farm, within walking distance of her home in Stow. For the fourth year, the equestrian center’s owners, Kathy and Mitch Steege, are turning their annual horse show into a fund-raiser for the Maynard-based Decibels Foundation, which benefits children with hearing loss, in her honor.
This year’s event will take place from 9 a.m. to 3 p.m. Sunday; registration is already filled, with 50 riders from four area farms. Red Acre’s horse shows have raised more than $40,000 for Decibels, through ads in the show program, sponsorships, donations, raffles, food and bake sales, and silent auction items.
Kathy Steege, who gives Dunning lessons twice a week, said she has been keenly impressed with her riding development and sportsmanship since her start on a pony 11 years ago.
“She’s a very competent horsewoman,” said Steege, noting that the teenager is often found helping other kids tack up their horses. “At the barn, everybody knows her and loves her, but it’s more than that. She never says ‘I can’t hear you’ or ‘that’s hard for me.’ Her ability to move forward touches all of us, and we want to do what we can to help the foundation and other children like her.”
Cofounded in 2002 by Bella’s parents, Mark and Julia Dunning, and their friends Jim and Sue Poor of Chelmsford, the nonprofit Decibels organization supports children with hearing loss through access to technology and equipment, funding for early intervention services at Minute Man Arc in Concord, networking and support for families, and consultation services and workshops for local school districts.
Mark Dunning said his daughter’s hearing loss was discovered during a screening test when she was 2 months old. She received her first cochlear implant at 21 months, and the second shortly after her Usher diagnosis at 8 years old.
Usher syndrome affects both hearing and vision, with three clinical types of varying severity. According to the National Institute on Deafness and Other Communication Disorders, four of every 100,000 children born in the United States have Usher syndrome.
Mark Dunning remembers the months following the diagnosis as “absolute misery,” but it was their daughter who gave her parents hope for her future.
“Bella knows she has Usher syndrome, and we’ve talked about what that may mean for her, but she’s so resilient,” he said. “We were mourning her future, but she lives in the moment so we came around to that point of view. She’s happy today and doing great today, so that’s what we’re focused on today. We’ll deal with anything else when it comes.”
Dr. Margaret Kenna, director of clinical research in the department of otolaryngology and communication enhancement at Boston Children’s Hospital, has treated Dunning since she was a year old. While there is no cure for Usher syndrome, Kenna said, clinical and research studies are in the pipeline.
“Exciting work is going on, although it isn’t fast enough for any of us,” said Kenna, who sits on the boards of the Decibels Foundation and the Coalition for Usher Syndrome Research, which the Dunnings founded in 2008. “It’s a rare disease, so it’s hard to say’’ what Dunning’s outcome will be, “but she’s not defined by it.”
Julia Dunning said her daughter has had a special gift for empathy from an early age. Still developing her speech as a 3-year-old, she was nicknamed “the Ambassador” in her preschool class at CASE Collaborative in Concord because she insisted on introducing every visitor and making them feel comfortable. In kindergarten, her teacher called home concerned because the other kids were fighting over who would sit next to her in class.
Her popularity has extended to the farm on Red Acre Road in Stow, where she became a fixture before she could walk. As a toddler, she only communicated through American Sign Language, which her grandmother did not understand, but there was no mistaking the meaning behind Bella’s furious signing when Patricia Willis turned her stroller away from the horses and back toward home.
“Riding has changed everything for Bella. She’s meant to do this,” Julia Dunning said during her daughter’s riding lesson on a recent Saturday morning. “It’s genetic. She got Usher syndrome, but she also got the horse gene.”
Dunning first learned to ride on Cinnamon Buns and Pooh, horses as gentle as their names convey. She moved on to First Star, and recently made her best jump — 2 feet 6 inches — on Apollo.
Dunning said that horseback riding has improved her posture and balance, and also her self-confidence through the trophies she has won in local competitions. She appreciates how her friends at the barn speak a little louder, read small print for her without being asked, and reach out with a steadying hand if she becomes “wobbly.”
In addition to this daily support, she is also touched by the enthusiasm of so many fund-raising teams dedicated to the Decibels Foundation.
“It makes me feel loved,” she said simply.
The nonprofit organization’s 11th annual golf tournament took place Monday. In addition, Bella’s 11-year-old brother, Jack, has led the “Stink Week” initiative at Blanchard Memorial School in Boxborough, where the fourth-grade classes collected $20,000 in February 2012. This year’s effort involving 600 students schoolwide raised $26,000.
While Dunning is optimistic that medical advances will halt her vision loss, she has begun using a cane as practice, and is comforted by the knowledge she’ll be able to ride horses either way. Her dream is to own her own horse farm, and to offer horseback riding as therapy for kids with autism, Down syndrome, and other special needs, but also for anyone who shares her love of the graceful animals.
“I don’t like to think about going blind. It’s scary. But I have a great family and great friends who are always willing to help me,” she said. “I’ve met so many great people, and I’ve done so many great things, that I don’t know if I would change having Usher syndrome. I’m happy with my life.”