After Emily Roach recovered from two consecutive surgeries on her skull last summer, the next thing she wanted to do was run the Boston Marathon. It may seem like an unexpected step after such a procedure. But Roach, 26, had her sights set on the race for more than a decade, starting when she was on bed rest after a surgery at 14 years old. In 2003, Roach was diagnosed with fibrous dysplasia, a rare chronic bone disease. She grew up in Danvers, her childhood marked with hospital visits, surgeries to prevent fractures, broken arms, and intensive recoveries. On April 15, Roach will join 30,000 other runners in the 2024 Boston Marathon, a 26.2-mile trek from Hopkinton to Copley Square. Having received attentive care from Tufts Medical Center for all her surgeries, Roach chose to run with Team Tufts Medical Center , a charity group that has raised money for the hospital throughout the past 10 annual Marathons. “I realized that we take for granted even being able to walk — never mind run — and I wanted to give back to the hospitals someday,” said Roach, who now lives in Medford and works at a travel agency in Cambridge. Advertisement So far, Roach has raised more than $12,000 for the cause, the second-highest amount on this year’s Tufts Marathon team, which comprises 50 runners, many of whom also have personal connections to the medical center. The team receives between 175 and 225 applicants each year, said Tiffany Reed, the chief development officer at Tufts Medical Center. “I’m super thankful for my
Friends and my family that have donated and supported me,” Roach said. “I’m really honored that all this money is going to a place that has helped me and my mom for so many years.” Fibrous dysplasia leaves the bones on the right side of Roach’s body prone to spongy, weak spots and fractures. By the time she turned 14, Roach had endured two hip surgeries, double-knee surgery, and a spinal fusion, placing a rod in her back to correct scoliosis caused by the disease. In high school, she had surgery on her head for the first time after doctors found bone cysts — benign, blood-filled tumors — on her skull following months of painful headaches. Advertisement Roach said she felt defeated when doctors found two more bone cysts in her skull last summer. She had gone nine years without the fibrous dysplasia causing her trouble, although not without visits to Tufts — not only for her own regular scans to monitor her bone structure, but also for her mother, who works as a nurse at Tufts and was diagnosed with rectal
cancer in 2019. Her mother received treatment at the center and became cancer-free in 2020, another reason Roach wants to give back to the hospital. Roach found her passion for running in high school, when she joined the track and cross country teams. She then went on to run one season of cross country at Endicott College and has continued the sport since. “I love to run, just for fun,” Roach said. “That’s how I relieve stress. I love to get outside and see new places through running.” After months of preparation, Roach is tapering her training, shortening her mileage to save her legs for the big day. Her Saturday “long runs,” which take place every weekend with her Team Tufts MC teammates and coach, have condensed to a slim 8 miles. Advertisement “Which is crazy to think — that that’s a short run,” Roach said. But after her 20-mile training run in the pouring rain with her team a few weeks back, Roach feels she can weather any conditions. “So far, I’ve been healthy,” she said. “I’ve been feeling strong and good, and I’m ready to take on the race in a couple weeks.” There is no known cure for fibrous dysplasia, so Roach will live with the disease — which affects her right leg, arm, and skull — for the rest of her life. It doesn’t inhibit her ability to run, but it does make her more prone to injury. She maintains regular imagery appointments, CAT scans and MRIs, to monitor the status of her bones and takes daily vitamin D and calcium supplements to strengthen her bone density. “She’s an amazing woman and has risen above this condition and doesn’t let it hold her back,” said Dr. Carl Heilman, the chief of neurosurgery at Tufts Medical Center, who removed the bone cysts from Roach’s skull. “[Her] drive and determination and her decision to not let this affect her and define who she is … is just incredible.” Dr. Marc Wein, an endocrinologist specializing in metabolic bone diseases at Massachusetts General Hospital, said fibrous dysplasia affects one in 10,000 people. “It’s quite remarkable and exciting that a patient with FD is running the Marathon,” said Wein, who was not involved with Roach’s care. Advertisement But Mary Kate Shea, the senior director of professional athletes at the Boston Athletic Association, the organization that coordinates the Marathon, said she is wary of placing too much emphasis on the diseases or disabilities, or the “inspiration aspect,” of many runners who embark on the road race each year. “What we focus on is the celebration of their athleticism,” Shea said. “They are able to run a race alongside 30,000 people, and that requires an amount of determination, dedication, training, athleticism, and it extends beyond the impairment.” “It is truly an amazing athletic feat,” she added, regardless of any bone disease or other conditions. Some runners, including Roach, train for the 26.2-mile span while also “going that extra mile — no pun intended — to raise money that really has a direct impact,” said Reed, the Tufts chief development officer. “Running for Team Tufts MC, ultimately, is a celebration of life and good health,” Reed said. “I cannot wait to see her cross the finish line. It’s going to feel like such a triumph.” Roach said she is “so excited” for Marathon Day, eager to “prove to myself that I can run this crazy mileage without ever having done it before.” Since joining Team Tufts MC in November, she has been diligent in her preparation. It’s meant early mornings, rising at 5:30 a.m. to get a run in before work; long runs through the rain, sleet, and
SNOW characteristic of New
England winters; pushing through on days where she’d rather rest, sleep in, and curl up inside. But she stays motivated. Advertisement “In the past, I haven’t been able to run,” she said. “After those procedures, I thought about training for the Marathon and how lucky and fortunate I’ll be, even just to be able to get out there. So the days that I really don’t want to go, I want to stay in and maybe it’s cold or snowing out, I just remind myself the ‘why’ behind why I’m doing this.” “There are people out there that can’t,” Roach said. “That’s how I stay motivated, and just set my sights on April 15.” Madeline Khaw can be reached at maddie.khaw@globe.com . Follow her @maddiekhaw .