Today has been a troubled day. Troubled because we heard an innocent, darling little boy of 10 died of the largest genetic killer of children. The same devastating disease our beautiful 6 year old boy Connor also suffers from.
Yet it’s a disease you have probably not heard of. Nor had we. Until that fateful day, just 4 days after his 4th birthday. The appointment we will never forget, with the most life changing result.
Following a very brief assessment of Connor, the consultant said, “ I think he has Duchenne Muscular Dystrophy.” I looked at my wife, she started welling up. We couldn’t comprehend what was happening. To this day I remember naively thinking everything is treatable, curable, he will be ok.
However, whilst we were awaiting confirmation of the consultant’s diagnosis, we did the exact opposite he had told us not to do. We turned to Google. My wife’s initial tears were due to the Muscular Dystrophy diagnosis but we had no idea what Duchenne was.
Just google Duchenne now and you will understand. The prognosis is dark to say the least.
We learned Connor’s muscles would gradually fail him, leading to loss of mobility around 10. Unfortunately, Duchenne does not stop there. As the lungs and the heart are muscles, it attacks them leading to respiratory issues and loss of life around early 20’s.
We wished for the consultant to be wrong.
To our terror the call came a few hours later to confirm it was Duchenne. We still find it hard to comprehend the diagnosis. It’s impossible to put into words how we felt at that moment and indeed now.
So what do we do?
We fight, that’s what we do. Every single, God damned day. We fight for Connor, we fight for every boy who has Duchenne. We fight to save their lives. We must. Aside from giving up and giving in there is no other choice.
However, others who do have a choice have chosen us, chosen Connor, chosen to stand with us, to fight with us…to join us on the journey raising as much money as possible, which will fund vital medical trials, improving the clinical research infrastructure. To find that Cure.
How do we do this?
The aftermath of diagnosis is horrific, Duchenne enters your lives and takes control. Until instinct cuts in and you fight back. Fuelled by love and support from friends, families and other parents from the Duchenne community we channelled this fight into creating a small charity called Chasing Connor’s Cure.
We are a family fund of Duchenne UK. Duchenne UK is the most amazing parent founded and run charity, with the most amazing people who provide the Duchenne community enormous support and hope. Duchenne UK seek out the best research projects which will one day find a cure, whilst improving the hospital network and knowledge base.
How do we raise funds?
Essentially, any way we can. We are continuously supported by the local community and our wonderful family and friends who have organised, helped and without question joined our fight to end Duchenne.
The biggest annual fundraiser is the Duchenne Dash. A London to Paris bike ride in 24hrs. The Duchenne community has a mission to end Duchenne in 10 years. The 2019 Dash will be the 7th year of that mission.
It’s by no means an easy task. It takes months of training and hard work to raise the £4K per person to achieve the overall target.
Last years preparation for the Dash nearly broke me. A point I have not aired before. The months leading up to it are full of hard work, training and raising the target funds. I work full time, I have 4 beautiful, but energetic, children…there is already not enough time in the day…but when your fight is to save your son, you find time, and energy, and are prepared to break yourself physically and mentally and then when it’s over…you decide to do it all again!
However, speak to anyone who joined me last year and in that 24hrs riding to Paris every moment is worth it.
Every time I walk through the door and Connor walks towards me with that cheeky, beaming smile on his face, I know we have done our upmost to keep him mobile, to retain that beautiful smile. Worth it, because as a parent, or participant you are making a direct difference to changing boys lives and making days like today a thing of the past.
Letting boys be boys, enjoying and fulfilling life.
If you are reading this and thinking 2019 is a year to challenge yourself, to be rewarded, to change lives, to End Duchenne, why don’t you fight for my boy with me and for all the Duchenne boys?
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