Diagnosed at the age of 15 with Becker Muscular Dystrophy, life came to an unexpected halt for me.
Activities of daily living became a challenge and I had to rely entirely on my Dad to take care of me around the clock. The condition took away not just my ability to move, but also my precious friends and the things I loved doing. With the progressive degeneration of my muscles, I was unable to participate in my favourite lion-dancing with my friends. Schooling soon became inconvenient, and eventually, impossible.
I was then isolated at home for 14 years, without an idea of what to do with my life. However, I was not ready to give up.
Fortunately for me, I was referred to join MDAS by the hospital. At the association, I was encouraged to join the various programmes and services. From building foundational functional skills, vocational training, to having specialised transport services and physiotherapy, I was handed a second chance at life.
MDAS helped me to rekindle my aspiration and created access for me to new opportunities through the journey-approach curriculum where support is provided every step of the way.
Now, I work hard every day to become a public speaker, graphic designer, Boccia athlete and most importantly, a contributing member to society.
It’s exciting to be part of a community again. A community that empathises with what I am going through, and understands the needs for persons who are defined to be left on the fringe of society. I am now able to foster new friendships and be exposed to different experiences which otherwise would not have been possible if I continued to be isolated at home.
This also meant that I now have the chance to contribute; to help my friends when they need more help than me and to advise the younger members on what they are going through.
I now feel valued and significant.
My role at the association is not only to benefit from the programmes and services, but also to proudly serve as an advocate for the welfare and quality of life for persons with MD and their families. Along with other peer ambassadors alike me, we go around corporations and institutions to create awareness about this destabilizing genetic condition. Although being an active advocate like this takes its toll on me physically, but I thoroughly enjoy what I do, because I know that only through awareness persons with MD like me can be aided to break-through the physical circumstances that restrict us.
The MD journey is not easy; with many hurdles to overcome. I am thankful that MDAS is able to improve the quality of our lives, making each day of our life count in so many ways.
