The diagnosis of Duchenne Muscular Dystrophy is a life-changing event. It would be so easy to react by turning inwards, despairing about the future, and concentrating on giving their child the best possible life, while trying to prepare for his or her early death.
Heaven knows, there are enough hard decisions and battles to fight when you have a child with any disability, that there sometimes isn’t enough energy left over for worrying about the rest of the world.
Mercifully, many Duchenne parents have not been content to just sit back and wait for their child to die, and a number of organisations have been created by parents, intent on finding a cure, not just for the potential benefit of their own child, but for generations as yet unborn.
The common aims of all these organisations unite them in the Duchenne Alliance – an international organisation that recognises the individual aims of each group, and supports them in the shared objectives of finding a cure for Duchenne and providing a better life for those that have the disease in the meantime.
The Duchenne Alliance have declared June to be Duchenne Awareness month. Please visit their website and thier Facebook page, where you can read about the courage of some of those living with Duchenne and those who have lost their sons and daughters to the disease but still fight for the cure that will save future generations.
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