Red for Ben Day to Raise Awareness of Duchenne

Ben Clarke, a Year 6 pupil at Trinity School who suffers with Duchenne Muscular Dystrophy (DMD) a rare genetic disease that causes progressive muscle breakdown will be inviting pupils at school to wear red to mark World Duchenne Awareness Day (WDAD) on Thursday 7 September and his Dad Alex will be holding a special assembly.

Each year, 1 in 5 boys are born with DMD worldwide and in the UK there are currently 3,600 boys and men suffering from the disease.

This year’s WDAD theme is Breaking Barriers.  People living with Duchenne face physical, healthcare and social barriers. This severely limits their ability to participate fully in community life and activities.  Ben, who is registered disabled, loves going to mainstream school.  With the help of the school he participates in all of the lessons and activities on offer including sports.  His family home has also just been extended and converted to be accessible for Ben to get around easily and be integral part of the family within the home.

Ben was diagnosed with DMD in 2017 after his Mum (Lisa) and Dad noticed he was falling over a lot.  He takes a lot of medication to help with the disease and unfortunately the steroids he takes causes changes in his bone density so this is treated with bone infusions.  Ben is just recovering from his fifth bone infusion.  At night he also wears splints which hold his foot at 90 degrees to maintain length in the calves and ankles.  He currently only uses a manual wheelchair for long distances.

Dad, Alex comments, “Seeing Ben’s resilience on a daily basis really puts into perspective the value of a positive mindset and looking at everything from a different point of view. Ben will always think about others and is such a kind and loving boy. However, after 10 years of learning new skills and physical abilities, Ben is feeling his body start to fail him more and more every day, and seeing it happen as a Father is heart-breaking. The impact on him mentally is something he is starting to share with us and those conversations are tough, yet he always finds a positive in it, and also a way to still be involved where he can. Attending at least 16 medical appointments per year would impact anyone, yet Ben goes into every one with a smile and a chat. There is also a balance to be struck to ensure his brother Zak is not the forgotten child. He, in his own way, is a massive advocate for Ben and Duchenne, knowing that Ben has weaker muscles, telling his friends about it and also ensuring he includes Ben in activities aligned with his abilities, not bad for a 6 year old!”

“As a family Duchenne is always there but we refuse to let is define who we are. We want to spread awareness about the condition as well as ensuring Ben has the best quality of life and as a family we make memories whenever possible.”

Alex has also organised for Henley Town Hall to be lit up with red lights between 4-7 September and his gym ADVHQ in Newton Road will be hosting another Red for Ben Day when the gym ‘Squaddies’ will be invited to work out in red to raise awareness.

Ben has been short-listed for BBC Oxford’s Make a Difference Bravery Award.  Alex added, “There are just four finalists and the ceremony is at the end of September.  This award is indicative of how amazing Ben is.”

As well as raising awareness of this rare disease, Ben’s family will be fundraising with a portion of this going to Duchenne UK. They are part of the charity’s family fund which can choose where the money is invested in. The fundraising link is https://www.justgiving.com/crowdfunding/WDAD2023BvD

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