I’m 10 years old and I want to tell you what living with FSHD is like for me.
How FSHD affects me every day
FSHD affects me every day. It stops me having a normal day like everyone else by giving me pains in my shoulders, neck and legs and other parts of my body. Every day I get really tired. Simple things can be really hard for me to do. My side muscles are too weak for me to sit on the floor to play games or watch TV. Its getting really hard to do handwriting because my muscles are getting weaker. I also have to sit down regularly because my legs get sore and I can’t walk any more. I miss out on some things my family does, like walking or swimming at the beach. My Mum and Dad don’t do some activities that they enjoy, like going bushwalking or going to the beach because they know it’s really hard for me. Going on holidays is fun, but it’s hard because I can’t get to lots of the fun places because my muscles are too weak or my wheelchair can’t get through. Last year we went to Wet ‘n Wild but I couldn’t go on any of the waterslides because I couldn’t get up the stairs. It sucked watching my sisters have a good time. Using my wheelchair in the house is a real hassle because the rooms are too small and I sometimes bang into the walls but Mum and Dad don’t get angry. We are building a special bathroom to make it easier for me to wash.
Some of the things I can’t do, but I would like to do
Some of the things I would like to do but can’t are athletics, cross country, walking with my family and many more things that normal kids do. FSHD makes it hard to play with friends. Most of my friends like to play soccer at recess and lunch, but I find it too hard so I feel left out. I can’t do those things because my muscles get too sore. For example, last year I wanted to try to race in the cross country. I walked down to the starting line, started the race, but my legs got really sore and I needed to stop racing and go to my wheelchair. I felt really embarrassed and sad because everyone was watching. So I don’t try to participate any more. When I get invited to play at a friend’s party I worry that there is going to be lots of running around.
FSHD affects the way other people see me and treat me
FSHD affects the way other people see me and treat me. There’s only one other kid I know in our town who is in a wheelchair. People don’t understand why I am in a wheelchair. When we go out kids and their parents stare at me because they don’t understand my disability. Kids pull weird and disgusting faces at me. It makes me feel ashamed and embarrassed. It is the worst when I go out shopping or when we mix with other schools. It makes me feel like not going out anywhere. Next year I start High School and I’m really worried the kids will stare at me and tease me.
Why I want a cure or treatment to be developed as soon as possible
I want a cure or treatment to be developed soon because I am worried about my FSHD getting worse and getting to the point that I can’t walk anymore. That means I will need to be in my chair all the time which that means that my Mum and Dad will have to spend more money on making the house bigger, buying hoists, shower chairs and toilet chairs and get changes done at school. I will also need a helper for when I need to transfer in to classrooms that don’t have ramps and out in to a different chair for doing simple things like going to the toilet.
The equipment I rely on
The equipment I rely on is my power wheelchair and my travel wheelchair. I also rely on specially made orthotics and that means I need special shoes that are very expensive. I rely on wheelchair accessible cars, ramps and lifts when I am getting somewhere. The equipment takes up most of the space in my room.
The worst part about having FSHD
Lately I’ve noticed that it is getting harder to get stand up when I’m on the ground. Eating some foods is hard. I have to get meat cut up for me. It can also get worse if you eat too much food and you’re over weight. Or it can just get worse by its self eventually. I hate that I can’t take short cuts around school but the teachers are good and they make everyone take the same path as I do.
The best thing about having FSHD
That you can get out of doing sports such as cross country and athletics carnivals. You can also play special sports for disabilities. Some of the sports are boccia, wheelchair basket-ball, wheelchair soccer and wheelchair rugby league and more. There are also kids camps that you can go to and meet other kids with similar conditions of muscular dystrophy and no one gets teased at those camps because most of the kid campers are in wheelchairs.
How you can help
You can help me and other kids out by donating to FSHD Global so that they can find a cure or treatment before my FSHD get worse. Please.
Sophie Howes, NSW