School rallies to support boy with muscle disease

STAFF at a Henley school held an awareness day for a new pupil with a muscle-wasting condition.

Ben Clarke, 11, from Sonning Common, lives with Duchenne muscular dystrophy, a condition which causes significant muscle weakness.

He joined Gillotts School last week after moving up to year 7 from Trinity Primary School in Vicarage Road.

Support staff dressed in red clothes and accessories to show their support for Duchenne ahead of the world awareness day on Saturday. He was diagnosed with the condition in 2017.

Living with Duchenne means Ben can have difficulty walking and often uses a wheelchair to get around. He experiences cramping and his condition means he tires easily.

Claire Collyer, the school’s special educational needs co-ordinator, said: “We wanted to recognise his condition but didn’t have a huge amount of time to plan anything bigger. We wanted to say how much we support Ben and want to raise awareness of Duchenne because I certainly hadn’t heard of it before I knew him.

“I think it’s really important and it’s our way of welcoming Ben here and raising awareness of the super awesome new student that we have.

“It’s important for the school to know Ben as an individual and to have that understanding of who he is and what life is like. It’s celebrating how great he is but also how things can be tricky sometimes.

“Sometimes difference can be really hard for other students to understand and with that education and knowledge we can help them to understand. With understanding comes that kindness. We pride ourselves in getting to know students as individuals and caring for them as much as possible. We want them to feel safe and happy.”

Ben’s parents Alex and Lisa started looking for a secondary school which would be able to accommodate Ben’s condition and they received assistance from the learning support team. Gillotts School has already adapted some of its facilities to make it more wheelchair-user friendly and they plan to install a lift for him so he can easily access the library.

Miss Collyer said: “Teachers have been notified of him joining and there have been lots of different changes to the school site so there are now quite a few automatic doors around. We’ve made sure rooms are more accessible.

“It’s a constant review that we’re having. Teachers picked up that the music room he was going to be in has a little step so now we can help him with that.

“The PE department are phenomenal at being really inclusive but also making sure that everyone’s safe and it might be that we just play it by ear. It might be that we have to do some physio with him to work on that. The PE team are brilliant at being really adaptable.”

Miss Collyer said that for next year’s Duchenne Awareness Day they will get more of the school involved, including pupils.

She said: “We want to make a lot more fuss about it and try and get the whole school in red or at least the whole of the year group.

“I’ve also spoken to Ben’s dad about him and Ben making a video together so that we could show that to tutor groups.”

Ben said he already feels settled in at the school and is happy to answer questions.

He said: “Sometimes people ask why I am so short and why I need a wheelchair and I explain that it’s because of my medication. I can walk but if it wasn’t for my medication, my steroids, I wouldn’t be walking right now.

“I felt really happy, just to know people care,” he said. “I’m part of the Gillotts family now. It’s a friendly environment. I’m feeling like I’ve been accepted in. The new school makes me excited as well but also very nervous because it’s a lot bigger than Trinity.

“Some days I have learning support but most days it’s just normal work (in mainstream classes).”

Ben is a fan of Formula One and has already signed up to the school’s robotics club and plans to attend homework club after school.

He hopes through awareness at the school other pupils will be able to understand what Duchenne muscular dystrophy is and how it affects him.