An article on Sabah's Daily Express caught my attention. It was published on 28 April 2011 entitled "A Mother's fight to raise awareness on Duchenne". I had expected it to be a third party account of a woman's fight but it turned out to be a very personal account. It was written by the mother herself, she retold the anguish she felt when her son was diagnosed with Duchenne muscular dystrophy. The struggle she and her husband went through about learning to deal with the condition. Her son's indomitable courage and positive outlook. As a parent, I was moved.
I have never knew anyone close who has Duchenne muscular dystrophy and I must confess, if it wasn't for this poignant article that evoked my parental instinct, I wouldn't have bothered finding out more about this cause. Yes, sometimes I'm guilty of it, being apathetic. It's not a conscious choice but like most of us, sometimes I get lost in my own world.
The mother who wrote the article is Catherine Jayasuriya, a Sabahan who currently resides in the United States. She had recently returned to Sabah to raise awareness on Duchenne.
She is the founder and Executive Director of Coalition Duchenne. An organization that seeks to raise global awareness for Duchenne muscular dystrophy and to bring together all the organizations from around the world towards one common goal that is to find a cure.
Catherine and her organization will bring their cause to the world's attention this September 2011 and they will be doing it at Catherine's home state, Sabah! They will be climbing Mount Kinabalu and they are gunning for the summit where they will raise Coalition Duchenne's banner on 9 September 2011. If you are interested or you know someone who might be interested, in joining them for a good cause, sign up here.
Duchenne muscular dystrophy is an incurable and deadly genetic condition that causes irreversible muscle regeneration which eventually leads to heart failure.
However, condition doesn't affect the mind of the afflicted. Their minds are as lucid as any healthy person. In Malaysia, we have our brave Albert Wong Kit Ming who last year, graduated with a Bachelor of Laws (LLB).
If you want to find out more about Duchenne Coalition, go to their website at http://www.coalitionduchenne.org , follow their Facebook page at http://www.facebook.com/CoalitionDuchenne or follow them on twitter @CoalitionDMD.