Pupils and staff at Trinity School wore red last Thursday to mark World Duchenne Awareness Day to learn about Duchenne Muscular Dystrophy that Year 6 pupil Ben Clarke has. Ben’s Dad, Alex hosted a special assembly, talking about the impact Duchenne has on Ben and what he has to do to manage living with it.
Alex explained to the children that Ben was born with the Duchenne and you can’t catch it. He then went on to demonstrate how Duchenne affects Ben’s muscles by asking two pupils to come to the front to put on weights on their wrists and asking them to keep their arms raised and another to put on a body weight vest and asking them to jump in it.
Asking pupils who takes medication and how many go to the hospital for appointments, Alex told the children that Ben has to take 12 tablets every day including steroids which have an impact on him growing and numerous different hospital appointments every month to monitor him. Alex then showed the assembly the splints that Ben has to wear every night to keep his muscles stretched with thick socks which are really uncomfortable in the heat wave last week.
Alex then invited the children to ask questions which included, does Duchenne only affect boys, how many people in the world have Duchenne, does it hurt the Mummy when they are pregnant, what does the medication taste like and will Ben’s Duchenne get worse?
Afterwards Alex said, “It was wonderful to do the assembly this morning. It was really nice that everybody listened and got involved and there were lots of questions and everybody wanted to be part of it and that makes a huge difference. It makes it easier talking to children because they are just sponges and they just absorb information. I think that the impact of them seeing the physical manifestation of what having Duchenne looks like is great.”