“My body refuses duty, but not my head”
Phillip is a 27 year old guy we met on the university campus in Cape Town, South Africa. He studies IT in Applications Development and primarily focusses on programming. Developing apps for Android and coding Java is now his major passion, but he has yet a lot to practice, so he admits. Phillip has a very positive attitude, has lots of things he dreams about, talks honest and straight about his life. Emotions are never far away. Phillip has a warm personality with that irresistible smile. He hopes to help others by telling his story.
How did your parents discover you had Duchenne Muscular Dystrophy?
I was pretty young – about 9 years old – when my mom noticed that I walked on the tip of my toes. It also became harder for me to walk the stairs. She first thought it was just a phase I had to go through and that everything would get normal soon, but when I started to put my hands on my knees to climb steps, started to fall over, not growing as normal like other children and walking slower, she realized something was wrong. I was finally diagnosed with Duchenne at the age of 11. When I was 19, I needed a wheelchair.
What was different in your life as compared to children that were in your age?
I never stopped going to normal schools and I have tried my best to just be part of the group. I loved practicing sports. First it was football, but soon enough I couldn’t run fast enough anymore. So I switched to table tennis and snooker. My abilities were restricted but I always found a way to be good at what I did.
It is hard for me though especially being in a wheelchair and having lot of challengers. I cannot go to a lot of places as I wish as it restricts me. It takes quite a bit of time going to places and that can be frustrating at times.
How do your friends react to your disease?
When I was younger, it wasn’t too bad. By being good at things (like snooker), my friends respected me. But I got bullied as well. Kids can be hard for one another you know. They imitated my way of walking and then laughed at it. That often made me angry and then I got aggressive. I hit someone’s face more than once because he made a fool out of me. And when I was unable to do it, there was always my brother to defend me.
The more I grow up, the harder it seems to make new friends. The ones I have now are grown-ups so there is a level of ‘manhood’ that plays an important role. Some of them now act tough, party, drink too much and impress the girls so I can’t and don’t want to be part of all that. That’s why I am left behind more often lately. Making new friends is also hard because people are often inhibited to get in touch with a disabled person. It feels like they are just scared off by it.
What is the impact of Duchenne on your family?
At first there was that major shock. Finally being diagnosed was horrible for sure. But in the meantime my family has accepted it. My brother and sister never laughed at me. They even stood up for me when I was physically unable to do so.
I still live at home so that makes me depending on my mother. She takes me to university and fetches me later. She even had to get a bigger car for that. She does everything for me even if I’m down she always gives me confidence to be more positive in life.
How (un)known is Duchenne?
Very few people know about Duchenne. When I say I have muscular dystrophy, most of my friends are even unable to repeat the name of the disease. The symptoms are fairly easy to recognize, but not many people really know them.
At university, the vast majority doesn’t have a clue of what my disease is all about. Not a single person has looked up information about it. Also in my community, most of them don’t know what the condition and tend to get the wrong information about a person with a disability.
It is so important to enhance awareness about Duchenne so that parents can recognize the disease quicker with their children. Because it can happen to anyone!
When tomorrow everything were possible, then…
Then I would love to travel, just leave and discover the world. I am convinced it would make me feel good, peaceful. Driving is another thing I would really like to be able to do. That would make me less depending on others for sure.
After graduation I would love to start a business to introduce and train other young people in the world of ICT. I would like to show them everyone can be a programmer, as long as you practice enough and be prepared to spend enough time on it. I also want to start a bus company just for disabled people. I found out that traveling by public transport is very hard when you’re in a wheelchair. It takes away a good deal of your freedom and independence. That, I want to change!
What else would you like to say to people?
It would be so great if people would just realize that a physical and a mental disability are two totally different things. My legs might not be up to the job, but my head for sure is! We are just normal people, like you all. We have feelings; fall in love, laugh and cry. We can have a great entertaining conversation. Please don’t be put off by just a wheelchair.