By Sarah Kelly
Medical conditions can be isolating for a family, particularly rare ones. Our lives changed when my little brother Jonathan was diagnosed with Duchenne Muscular Dystrophy (DMD) aged 2. Whilst my family knew of Muscular Dystrophy, we had never heard of DMD. I think this was really isolating as there wasn’t a lot of information out there on what this illness meant, but one thing was for sure, Jonathan was an extraordinary toddler that made us smile every day.
To introduce myself, my name is Sarah. My brother Jonathan has DMD and he is 19 years old. I am a carrier of DMD and I decided to volunteer to give back to the amazing organisation that is Action Duchenne. I think that the work that they do is amazing in helping to find a cure for this rare condition. They also go above and beyond to help families receiving this diagnosis know that they are not alone.
Jonathan was in mainstream education until around 8 when it was decided he would do better with more 121 support and he was moved into an additional support unit. At this point, my parents were worried about what the best course of action would be for when Jonathan moved up to high school. This is where Action Duchenne’s Turning Point Program would be of great use to ease this transition. Please sign up for this program if you haven’t already! In the end, my parents decided that an additional support unit a secondary school would be best. He loved it there and has since finished school and now attends college which he loves.
Although Jonathan attends college and has lots of friends with other additional support needs but something interesting is that he has never met a fellow boy with DMD. This is why we need events like Parallel at Windsor.For those of you that don’t know, Parallel Windsor is a festival of inclusivity that is fully accessible to those with any health conditions regardless of age. There is the option to walk, push or run the long walk with a choice of distances (100m, 1K, 5K, 10K or their SuperSensory 1K). Additionally, there are a lot of other activities including adaptive sports. This is a great opportunity for not only those with DMD but also their families to get together and meet each other.
This is incredible as it will allow families like mine to no longer feel isolated and be able to meet others that they can relate to. This in turn will increase the boy’s self-esteem and allow them to talk about the illness with others to show that they are not alone. Additionally, the success of Action Duchenne’s Yes I Can program for 14-25 year olds shows that meeting others in a similar situation has a positive impact and the online sessions enable young people to make connections, feel understood and develop crucial support networks.
Additionally, the motto of the day is : ‘Start Together, Finish Whenever’. Everybody who starts gets a medal, t-shirt & goody bag which shows just inclusive the event is. Overall, my family think that events like Parallel are amazing for families to meet others that are going through the same thing as them and we look forward to attending more events as a family in the future. Thank you so much for reading this blogpost. Please click below to sign up for your free tickets for Parallel Windsor 2024!
