STONEHAM, MASS. (WHDH) – A middle schooler in Stoneham is making the most of a difficult situation after his activities became limited due to a rare disease. And on his road to recovery, he and his mother are hard at work helping other people in similar situations.
“It definitely hasn’t been completely normal but it is definitely getting better,” Sully Wilkey told 7NEWS.
Sully, a sixth-grader, has been diagnosed with HHT, a rare blood vessel disorder, which has impacted his ability to play sports and left him with frequent headaches and nosebleeds. As a result, he’s missed months of school.
Doctors were able to diagnose him after determining his mother has the same disease.
But the diagnosis didn’t drag Sully down, he joined forces with his mother, who founded the Serenely Guided Foundation, which supports those living with rare diseases.
“The community can be so helpful with anything they need,” his mother, Sarah Woods said.
Since his diagnosis, Sully has been able to get back to school and return to the sports he loves.
His words of advice are always stay in tune with what your body is telling you.
“Be aware … and don’t let it stop you with what you’re doing,” he said.
Support from their foundation includes providing resources, caregiver assistance, and youth workshops on how to better understand rare diseases.
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