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Patient Spotlight: Mara Watson

Mara’s battle with FD/MAS began when she was a toddler.

After a seemingly minor fall she avoided putting any weight whatsoever on her leg and foot. A doctor’s appointment revealed a peculiar spot on her fibula that was diagnosed as benign. 

Mara is now a resilient thirteen-year-old who has displayed an indomitable spirit throughout her childhood. Despite multiple bone fractures, she never allowed the pain to dampen her spirits. In the third grade, she snagged her toe on a blanket, which snapped the bone in half. X-ray images showed spots on her bones, and she was diagnosed with fibrous dysplasia. 

Living in Pullman, WA, a small rural town, the Watsons sought specialized care hours away at a Children’s Hospital. The two-hour MRI session was a challenge and revealed tumors in her pelvis, femur, fibula, calcaneus (heel bone), metatarsals, and toes. It was a relief when the biopsy results confirmed fibrous dysplasia and ruled out cancer on her 10th birthday. Mara received infusions, and surgery was recommended to place a rod in her femur.

“It felt like I was overreacting, seeking information about a rod placement in her femur – that wasn’t even fully grown. The doctors didn’t actually suggest treatment until I started asking about the merits of prophylactic surgery. We didn’t realize how fragile her femur truly was until we were at a family retreat center in the woods before her planned surgery. While doing typical kid activities, her femur broke.”     

Mara’s helicopter rescue was a testament to her composure as she conversed with the EMT, who stabilized her leg and transported her to safety. After surgery, she got around in a wheelchair during middle school and made the best of it by dressing up as Crutchy from “Newsies” for Halloween. 

“The FD/MAS Alliance has been an important resource for our family. We support the Alliance because we know that it takes grassroots efforts before we can expect to see significant research advances. Mara has been in so much pain as a result of her fibrous dysplasia. There has to be a better solution for people who struggle with this disease.”

Mara’s tenacity extends to her work ethic at school. Despite facing pain flare-ups and seven days on the couch following infusions, she never misses assignments or deadlines. 

During our family sabbatical in Spain, Mara raised funds for the FD/MAS Alliance by getting sponsors for her eight-mile walk on the Camino de Santiago. This year, she organized ‘Team FDMAS,’ composed of 19 kids and 13 adults who walked seven miles from Moscow, ID, to Pullman, WA. The funds Mara raised benefited both the FD/MAS Alliance and a brain cancer organization, honoring a family friend battling the disease. 

Consider donating to support the FD/MAS Alliance.