Thirteen year old Adam has a rare muscle-wasting disease called Duchenne Muscular Dystrophy (DMD). There’s currently no cure for DMD and it’s a life-limiting condition but this doesn’t stop Adam living life to its fullest – he loves football, is a black belt (yes – a black belt!) in Taekwondo and regularly attends Scouts.
Adam receives care from Julia’s House, but the COVID-19 crisis means that due to his condition and his vulnerability to infection, we are now providing support to Adam and his family via regular video calls. Here Adam explains in his own words what his lockdown experience has been like so far…
Q: How are you finding the lockdown?
A: I am finding the lockdown annoying because I cannot do any of my hobbies and see my friends but I understand that it is to protect me.
Q: What are you missing?
A: I am missing going to watch AFC Bournemouth play and getting to see the players as they arrive for matches, and playing my power chair football for AFCB Warriors and Cheltenham All-stars. I am also missing my Scouts & Taekwondo. Both AFCB Warriors and Weymouth South Scouts have been doing things weekly via Zoom, which has really helped me.
Q: What is the most challenging aspect of lockdown?
A: Because I am shielding this means I cannot even leave the house to go for a daily walk, which I am finding really hard.
Q: How are you keeping occupied?
A: In school time I am keeping myself occupied by following my daily school timetable and doing the work that has been set for me, I am also baking, making Lego and watching Star Wars on Disney + and also playing on my Xbox.
Q: How are you keeping in touch with friends and family?
A: I am speaking to some friends on Xbox as well as using FaceTime and Zoom and speaking to my Grandma on the telephone.
Q: How is Julia’s House helping?
A: I had a video chat and quiz with Nurse Nat, which was entertaining, Nurse Nat has also kindly collected my tablets from the chemist for me and when delivering them I had a nice conversation with her through my door.