Gym members wear red for boy with muscle wasting disease

STAFF and members of a gym in Henley held an awareness day for a boy with a muscle-wasting condition.

Ben Clarke, 12, from Sonning Common, lives with Duchenne muscular dystrophy, a condition which causes significant muscle weakness.

He supported about 40 people during their exercise classes at ADVHQ gym in Newtown Road on Sunday who dressed in red clothing to mark World Duchenne Awareness Day. Ben, who is in Year 8 at Gillotts School, was diagnosed with the condition in 2017, aged four.

Living with Duchenne means he suffers from fatigue and often uses a wheelchair to get around because he has difficulty walking. The medication he is on also impacts his growth, meaning he is shorter than his peers and friends at school.

Ben’s father Alex, 49, first set up the event with the gym two years ago to raise awareness of the condition, which affects between 3,500 and 5,000 male births worldwide.

Mr Clarke said: “I have been a member of the gym for four years now and every year we run a ‘Red for Ben’ day.

“It was advertised internally among all of the members and there were some requests to fundraise so people could donate through a QR code. Many parents who have children diagnosed with Duchenne have never heard of it before so it is a very rare disease.

“It’s very important that we raise awareness of the condition because, unfortunately, there is no cure.”

Marco Barcella, of The Creative, and his family produced an Instagram video where Ben tells his story in his own words. He talks about how his body is unable to produce dystrophin, a protein which maintains the structural integrity of skeletal muscle and how he maintains his hobbies including gaming, aviation and Formula 1 while living with frequent hospital visits and check-ups. The video has reached more than 25,000 people.

Mr Clarke, who is married to Lisa, and has another son, Zak, eight, said the video was “incredible”. To view it, visit benvsduchenne on Instagram.