Grace, who’s 14 and lives with congenital myopathy, received an electric wheelchair through a partnership with our Joseph Patrick Trust grant giving arm and Whizz Kidz. She shares how challenging life was when she only had a manual wheelchair, the freedom her new electric wheelchair has given her, and why grants like this are important.
“My new wheelchair means I can join in with my school friends.”
Before receiving my wheelchair, there were so many things I couldn’t do, but now? I have the freedom to do anything other 14-year-olds do. I can finally ‘walk’ to school with my friends instead of being driven by my mum. I can easily get around my local stables where I horse ride. And I can join in with team building games on the big field at school. I finally have some independence!
It’s hard not being able to do things you used to
My type of muscle wasting condition makes it really hard to walk or even stand for long. My knees feel like they’re on fire if I walk too far, and I used to fall over more than a dozen times a day before I started using a manual wheelchair. I couldn’t keep up with my friends or do the same things they did. Even holding a pen became impossible, so I started learning touch typing and I’ve been doing that at school for about three years now.
Getting my diagnosis was a long and confusing journey. My mum always knew something wasn’t right, even when I was a baby. I’m a twin, and I also have an older sister with complex health needs, so my parents knew what signs to look for. Doctors thought it was just a developmental delay at first. Then I was misdiagnosed with other conditions until they finally looked into genetic muscle wasting conditions. I only got my proper diagnosis at the end of 2023 when I was 12.
Since then, it’s felt like a rollercoaster. My mobility got worse quickly, and I can’t do a lot of the things I used to. Some days are better than others, but I was finding things harder and harder before I got my new wheelchair.
Before my electric wheelchair I regularly felt left out
Even though we live only four minutes from my school, I couldn’t walk there like everyone else. It was upsetting to see my friends walking and laughing together while I was being driven in my mum’s car.
The NHS gave me a manual wheelchair, but as I can’t push myself, it didn’t really help me be independent. I couldn’t go out with friends, and I missed out on so much. Everyday things became exhausting, and I felt stuck — like I was just watching life happen around me.
I couldn’t go out with friends, and I missed out on so much. Everyday things became exhausting, and I felt stuck — like I was just watching life happen around me.
At school, it was hard too. I’m the only one with mobility equipment, and sometimes people don’t understand. I’ve had to deal with people being unkind or making assumptions, which made school feel really lonely. But things are better now — I’ve found friends who really get me and support me.
Getting my electric wheelchair has been awesome
We applied for the grant from Whizz Kidz and Muscular Dystrophy UK in February last year. When I found out I’d been accepted I was so thankful that I’d finally be able to go out and have fun. The day I went for the fitting was awesome; I was whizzing up and down the pavements, and for the first time in a long time, I felt totally free. My mum said I had the biggest smile ever and if it wasn’t for my ears, it would have gone all the way around!
The day I went for the fitting was awesome; I was whizzing up and down the pavements, and for the first time in a long time, I felt totally free.
I finally received the wheelchair in May this year. Although it was a long wait, it was so worth it. My new electric wheelchair is amazing — it’s purple which is my favourite colour. Learning to use it has been exciting. The controls are easy, and I’ve even learned how to adjust my posture to move around better. Every day I feel more confident using it, and I feel like I have my independence back.
With the wheelchair, I don’t get as tired or sore, which means I can do more on my own. I can hang out with friends, go places without help, and just enjoy life without constantly thinking about pain or falling over.
I can hang out with friends, go places without help, and just enjoy life without constantly thinking about pain or falling over.
Everyone deserves freedom like I now have
This wheelchair isn’t just a piece of equipment. It’s a way for me to live life on my own terms. I’m so thankful to everyone who helped make this happen. Grants like this are so important. Not every family can afford something like this, and no one should have to miss out just because of money. The right equipment can change everything. It has for me.
