Wednesday, 13 August 2014

I Wish My Best Friend Had Cancer*

*no I dont

My best friend has Duchenne. I have only ever known him as he is now, handsome, strong and intelligent. And in a power wheelchair when not in bed, and reliant on a ventilator to keep him alive. I've never known him running, sitting independently, writing, moving, eating, drinking. If I had grown up with Daniel maybe I would feel differently. If I had watched his decline, maybe I too would wish he had something potentially curable, less cruel.

Physically Daniel isn't in great physical pain, he doesn't have to have treatments like chemotherapy, lose his hair (age is doing that!) or suffer from side effects like neutropenia. I have seen cancer. It's horrible, frightening and the outcome is uncertain. The end can be swift and painful.

Last year Harrison's Fund's Alex Smith spearheaded the "I wish my son had cancer" campaign. I was horrified and hurt. I would never wish cancer on anyone, not my best friend and certainly not my son. I have seen my son fight for his life, told to preparer for the worse, so I am not without understanding.

I was critical of these shock tactics. However, I can see that this tactic was necessary.

A year on, the climate has changed. People are talking more and more about Duchenne. They are talking about early access to drugs, to experimental treatments. Great things are happening. Is this down to Alex Smith's campaign? The full impact cannot be known, but I think this hard hitting campaign got people not only talking, not only listening, but acting. For now, we are stating to see legislative change. Daniel has got involved and I am so proud of him, you can read his latest article here.

The time is now to keep fighting, supporting research, and pushing for change. You can read more about how to support the Muscular Dystrophy Campaign's Fast Forward Initiative here

To learn more about the amazing Harrison visit and consider supporting Harrison's Fund. 

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