AJ was diagnosed with Duchenne muscular dystrophy as a toddler in China. Now living in the UK, he shares how education, accessibility and newer treatment are shaping his ambitions for greater independence, as well as his unique position to still be able to walk at 17.
“I’m grateful I can still walk at 17 despite having Duchenne”
I was diagnosed with Duchenne muscular dystrophy when I was around two and a half years old. Living in Beijing, China, children had to have routine blood tests before starting school. Abnormalities led to further tests and discovering I had Duchenne.
Because I didn’t have any obvious symptoms, the diagnosis came as a huge surprise to my family. From that early point, Duchenne became part of our lives, although my experience of it has continued to change as I’ve grown older. Moving countries and learning to navigate a different healthcare system have both shaped how I understand and manage my condition today.
Moving to the UK changed a lot
I moved to the UK about five years ago. Adjusting to a new country, education system and healthcare system was a big change. Over the years, Duchenne has gradually affected my mobility. I can still walk at 17, but stairs, long distances, standing for a long time and keeping my balance can be difficult. I sometimes use a wheelchair to conserve energy or when I’m travelling further.
My doctor says I’m doing amazingly well for my age and encourages me to exercise and eat healthily. I follow my consultant’s advice, attend regular appointments and avoid pushing myself past what feels comfortable.
I’m grateful that I can still walk, while understanding that everyone’s experience of Duchenne is different.
“For me, staying healthy is about finding the right balance. I try to remain active within my abilities, while listening to my body and recognising when I need to rest or use my wheelchair to conserve energy.”
Regular appointments also give my healthcare team the chance to monitor my health and mobility and help me understand what support I may need.
I’m taking Givinostat as part of my Duchenne treatment. Being able to access treatment while I’m still ambulant is so important, and I hope it can help me maintain my mobility for as long as possible.
Good support makes independence possible
Accessibility is still one of my biggest challenges. A place may be described as accessible, but that doesn’t always mean it works for someone with my level of mobility. Transport, stairs and getting around buildings can all affect how independent I can be.
I’ve experienced these challenges at school, but my new sixth form has already taken time to understand my needs and put the right arrangements in place before I start. That support is reassuring and shows how much difference appropriate adjustments can make.
Small practical details can determine whether I’m able to take part fully. Suitable transport, accessible routes between rooms and staff who have planned ahead can remove a lot of uncertainty.
“When those things are in place, I can focus more of my energy on my education, friendships and plans for the future, rather than worrying about how I will get around.”
Working towards my goals
I’m currently studying History, Psychology and Geography and working towards my A Levels. After sixth form, I’d like to go to university and eventually find a career I enjoy, possibly something related to history. Becoming more independent, travelling and making my own decisions are all important to me.
I’m still deciding exactly what I would like to do, and I know my plans may develop over time. What matters most is having the opportunity to choose my own path. Continuing my education would allow me to explore the subjects I care about, build confidence and take another step towards the independence I want in adult life.
Outside of college, I enjoy reading history books, playing the piano and spending time with friends and family. I also volunteer as a marshal at Market Harborough parkrun because I like helping people and being part of my community.
I hope sharing my story helps people understand that Duchenne affects everyone differently. It’s part of my life, but it doesn’t define who I am. I still have ambitions, interests and a future I’m working towards.
