Lizzie, Duchenne Mummy and one of Action Duchenne’s volunteer Community Champions, was asked to go into her son’s school to give a talk about Duchenne to all the pupils in their morning assembly. Lizzie had previously been to speak in a staff meeting and the school team were keen that pupils learn more about what living with Duchenne means for their fellow pupil, Lizzie’s 5 year old son Sebastian.
Lizzie and the school worked to coordinate this around Rare Disease Day 2020.
Talking to the children
Lizzie was really excited to be given the opportunity to talk to the children in Sebastian’s school. She explained lots of things about Duchenne, including:
- How Duchenne happens – that it is caused by a missing part of the “jigsaw” which makes up our bodies.
- Our muscles – what they do, where they are in our bodies and what effect Duchenne has on them all.
- Thinking about the things that Sebastian CAN do – explaining that he can do everything everyone else can do but that he might need to do it a bit differently or with some help.
- The impact of Duchenne on the brain as well as the body. This means that Sebastian might think differently, do things at a different time or in a different way or say things differently. This is part of what Duchenne means for him.
- Living with Duchenne means that Sebastian’s life isn’t quite the same as people without Duchenne – he has lots of appointments with different doctors, he wears splints at night and does physiotherapy every day. He also needs things to help him, like a special chair to sit in at home and at school, a wheelchair for when his legs get tired, a ramp at home to help him climb up the step. He will need more of these things as he gets older and his muscles get weaker.
Lizzie finished the presentation by reminding the children that we are all different and that those differences are what make us who we are. Our differences make us special!
Lizzie then went into the year 5 and 6 classrooms where she answered questions about Duchenne in more detail.
The impact
We felt you explained Duchenne in a way that was accessible for everyone from the 4 year olds to the 11 year olds. The pupils were talking about “the jigsaw” for the rest of the day!
Lizzie found it to be such a valuable experience for the pupils. Awareness is so important in order to increase understanding for Sebastian and for his younger brother Toby as they go through the school, and this advocacy is a key part of Action Duchenne’s aim of building a community and educating people about Duchenne.
Visit to Royal Holloway
