I’m Tracey a proud mother of Jack, a 17 year old, young man with Duchene muscular dystrophy. I’m proud that he has achieved 10 a- c grade gcses and is now doing his A levels, I’m proud that he was chosen to take part in the Olympic torch relay as he raised over  £17,500 for muscular dystrophy and I’m proud that he faces his daily challenges with such a fantastic attitude.

Jack was diagnosed at the age of 3.The School nursery saw the first signs as another boy was diagnosed with Duchene a few months before. We had never even heard of the condition never mind dreamt that it could be something so serious. The day his diagnosis was confirmed I felt like my world had ended and my family would not become how I had imagined it to be. We gradually settled into the abundance of routine appointments and began to build excellent relationships with all the professionals involved in Jacks care. Between the ages of 3 and 6 I could see a gradual decline in Jacks walking ability.I cannot convey how heart-breaking it is to watch your child decline before your eyes. Jack went off his feet surprisingly quickly. It felt that one day he could walk and the next he couldn’t. I had to come to terms with the fact that he would never walk again. I still don’t believe this has really sunk in and I still dream of what could have been.

The emotional side to the condition is something we do not see. We are aware of the gradual physical deterioration but what we cannot see is how that affects the boys that are at the centre of this illness. I have always told Jack that he can ask me anything and I will always tell him the truth. Thankfully he has not yet asked about the prognosis as I do not know what I will say. I cannot deal with that myself and it is the first thing I think about in the morning and last thing I think about at night. I have always remained positive and sure we will find a cure or just something to stop it in its tracks. I feel now we are nearly there and there is a glimmer of hope on the horizon. We do not have time to waste, these boys need a cure now not in 10 years’.  We cannot lose another generation to Duchene.

I got involved with the md campaign when they launched the Yorkshire and Humber muscle group. I have since been to Westminster, done radio and tv interviews and hopefully raised the profile of this debilitating condition. I was so honoured when they asked Jack and myself to be ambassadors and hopefully this is the start of a fantastic journey.  I would like to finish by quoting a line from jacks fund raising letter he said “I do really love my life the way it is but if a cure could be found for muscular dystrophy, I know that would make my life and everyone else’s a lot better.” 

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