This is something I wrote for the Save Our Sons Facebook page. Save Our Sons (SOS) is a charitable organisation that raises funds for research into Duchenne Muscular Dystrophy - one of the most common severe genetic diseases and one that I have.
SOS irritated me greatly earlier in the year with their impressive robot arm campaign which tugged on the heartstrings, while simultaneously removing all hope from those with Muscular Dystrophy.
They are trying to move people to get them to go donate. Muscular Dystrophy – is not a death sentence. There are treatments such as mechanical ventilation that greatly extend the life of people with muscular dystrophy - we don't really know what the average life expectancy is. We shouldn't be speaking in those terms.
Here it is:
I have Duchenne Muscular Dystrophy and so does my identical twin brother. We both turned 35 in April this year.
When I was 20, I got very sick and was told that I had reached the end stage of my disease - that I should be taken home, made comfortable and wait for the inevitable. I went to the emergency room one last time and was finally told that I needed a ventilator. I was sent up to the ward and when I got there I met another guy with DMD who was in his 40’s. As soon as I saw him I knew that I would live and all my hope returned.
I watched your video and I thank you for adding that bit about the ventilators. I was not very impressed with the 100% mortality rate described. Don’t forget life itself has a 100% mortality rate. I’m not dead yet and neither is my brother or many of my friends. It is medical technology, such as ventilators, and hope that keeps us alive. We need to keep that hope alive so as many people with DMD as possible make it to see the cure. We don’t just want this cure for the next generation, we all want to see it.
Ventilation is not the answer for everybody with muscular dystrophy, but there must be other technologies out there that will allow everybody with muscular dystrophy to live long enough to see better treatments and finally a cure.
I think your campaign has great intentions and I support it 100%. I just don’t want young people with DMD to think that very early death is an inevitable consequence of being diagnosed with DMD. Keep hope alive, keep fighting.