A small boy walks onto the stage. The whole audience starts muttering: ‘Who is this kid?’ ‘How old is he – five!?’ ‘Where are his parents?’ ‘What is he going to do now?’ He freezes in the middle of the stage, and drops his head. The crowd falls silent.
The next moment, a hip-hop song starts pumping through the speakers, and the little body on stage comes alive with the most incredible dance-moves. Throwing his weight across the floor, his energy sets the crowd alight, and they all cheer him on. His frame pops, stomps and hip-hops with electrifying energy across the floor. As he throws the final move, the crowd jumps to their feet, with roaring applause and cheers all around.
He walks to the mic, still panting, and says: “Good day, everyone. My name is Oscar Von Memerty, and I am not 5 years old: I’m actually 19.”
Oscar was born with a rare genetic disease. He dances his way around the country, inspiring thousands of kids with his story, and creating awareness about his condition. We had the priviledge to interview him for ourselves:
1) Oscar, we understand that you’re the face of rare diseases: What exactly does this mean in terms of your lifestyle?
I work with the Rare Disease Society of South Africa (RDSSA) as their brand ambassador and a spokesperson for the MPS. I’m also doing my matric, building my brand as a motivational speaker and professional hip hop dancer.
2) Wow. That sounds like a lot of work – even for a healthy adult! How do you do it!?
Yes, it is a lot of work. I get up early in the morning and often only get back late afternoon. My schedule can get rather chaotic, especially when I’m travelling. When I get back from the office, there is still homework and studying to do!
The stress takes its toll on my body: Although I am an adult, my body is only as developed as a minor’s, so I need longer recovery time between gigs.
3) Why was it specifically hip-hop that grabbed you?
Hip-Hop gave me the power of self-expression. It was also something I could do by myself, despite my limitations. It gave me a huge sense of freedom, because there are so many other activities that I can’t do, such as sport.
The dancing forced me to go out and show the world what I could do, and this helped me to work past my low self-esteem. It taught me that in order to grow; we have to do things that are uncomfortable.
4) You’re a role model for anyone suffering with a rare disease, but also for those who are bullied, or shunned for various reasons. Could you tell us about your condition, and how it affects your life?
My condition is called MPS 6, an inherited metabolic disorder. It causes damage to the tissues, and is fatal without treatment. Due to the gene-defect, I lack a very important that makes the fatty acids needed to breakdown waste in the cells. So, the waste builds up, which can lead to tissue and organ damage. The condition progresses over time, and I would have been much worse off, had I not been diagnosed and treated in time. I may not have been here today!
5) Is there a cure for MPS?
No, there is no cure, but thanks to fundraising, I’ve had enzyme replacement therapy, and two bone marrow transplants. This improved my life 10x, so I can live a normal life!
6) What do you find the most difficult about your condition?
This may sound strange, but it’s hard that my brain is completely unaffected. I know and understand what’s happening around me, and I’m very aware that my body is failing. This can sometimes get me down.
The good news is that the treatment helps to prevent it from getting worse. I may actually live beyond my 70th birthday!
7) What are your hopes for your awareness campaigns?
I am able to do hip-hop today, because of the funds that we raised for my operation. There are other people out there like me. By supporting the RDSSA, you give me a chance to share my experience with other kids, and you give someone else out there a chance to live a normal life.
Because we are in the minority, we need help: There is a lot of support for common diseases like Diabetes, but not for us. Through the RDSSA, we get an opportunity for treatment research and funding, to live a normal life.
8) You’re a motivational speaker, and you tell a lot of kids how to deal with bullying. Do you have any tips for other kids out there?
When I am down I call my parents for advice, or I allow myself 30 minutes to mope and then I remind myself about everything that I have achieved and I dust myself off and try to tackle the situation.
I also like to write down my feelings and why it’s affecting me and then I weigh out the pros and cons to come up with a solution or a plan on how to deal best with the problem.
And, then of course, theres my dancing! Often if I was angry or sad I would go and dance because it allowed me to focus on something else. After dancing I would be in a better state of mind which meant I could reason with my feelings and make sense of them.
I would encourage other kids to do the same: you have a lot more in you than you know. You can defy your limitation. With determination and loving support, you can do much more than you imagine!