MR.SA 2008 Helgard Marais: Duchenne Muscular Dystrophy (DMD)

Mr. SA Finalist, Helgard Marais spend some quality time with the boys

As a finalist for Mr. SA 2008 I see it as my job to support as many causes I can in the privileged time that I am a finalist. Duchenne Muscular Dystrophy (DMD) being one of the rare but dreaded diseases in the world that touched my heart specifically, because in all of the cases parents have to deal with the devastating trauma that their children’s mobility will deteriorate at an early age and die in their late teens or early twenties. DMD is the most common 100% fatal genetic disorder to affect 1:3500 young boys throughout the world. There is currently no way to stop DMD from progressing once a boy is born with this disorder. I decided to make a personal visit to 2 boys and their family who have recently being diagnosed with Duchenne Muscular Dystrophy (DMD).

With this visit I had wanted to achieve the following goals:

- To lift the spirits of this remarkable family.

- I felt the need to learn more about this disease, treatment options, support structures etc. available within South Africa.

- Strategise around ways to create public awareness of this rare but dreaded disease.

In an effort to increase the awareness I have sponsored an internet banner on the Official M

r. SA website out of some of the proceeds from my fundraising event.

This is Colin & Suzanne McKenzie’s with their boys Justin and Joshua and little girl Jessie, who at face value look like regular children.

Both Justin and Joshua have recently been diagnosed with Duchenne Muscular Dystrophy (DMD). Their beautiful smiles hide what is going on inside their bodies, for their muscles are deteriorating at an alarming pace.

Unless a cure or treatment for Duchenne Muscular Dystrophy is found, Justin and Joshua will lose their ability to walk by adolescence, and subsequently lose all muscle function. Like all boys with Duchenne, they will die from respiratory or heart failure in their late teens or early twenties.

The McKenzie family’s lives where shattered in September of 2006 with blood tests, their whole lives changed. It was confirmed that both these beautiful children have this debilitating condition that will slowly erode every action that we all take for granted.

As for their young daughter Jessie, the tests can not be done here in South Africa until she is of child bearing age and able to give consent. She is unlikely to suffer the muscle deterioration until she is in her 60’s and older, however she has the possibility of also being a carrier like her mother which could result in her also giving birth to boys who will suffer the same fate as her brothers.

As a family the McKenzie’s are at the beginning of a journey that will take them to places they would never have dreamt of, challenge their strength and family bond and highlight that in tough times, there are family and friends that rise to the occasion and will do anything to assist, and sadly those who turn around and walk away. It is in these times that true friends are found.

As a finalist for Mr. SA 2008 I am actively supporting muscular dystrophy by creating as much awareness about this disease and the available treatments as most South African parents are not aware of some effective and well research treatments that are available in other countries.