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Thursday 3rd May 2007. A date I will always remember. The date I received a phone call advising me that the results for the ‘routine blood test’ for our two year old son, Thomas, had produced an exceptionally high reading. The blood test was intended to rule out Muscular Dystrophy as a reason behind his delayed walking.
“I don’t know how to say this” said the paediatrician. I knew precisely what she was going to tell me. Or at least I though I did. My previous searches on the internet had not prepared me for the terrible reality that my son had Duchenne, the most serious form of Muscular Dystrophy. I soon found out the devastating reality; the fact that boys with this progressive condition will see their muscles waste away with all that it entails.
The initial period was almost unbearable as we tried keep Thomas’ routine going whilst we sought to come to terms with the diagnosis. Boys who are diagnosed this young with Duchenne Muscular Dystrophy show very few, if any, signs of the condition. Put simply, Thomas appears a health and happy little boy.
In the following months, I met a number of other families faced with the same reality. Together, we have learned of the real medical advances which have been made in recent years in terms of gene and cell therapy. However, the hope and optimism generated by recent scientific progress and clinical trials is totally dependent upon the hard work and generosity of fundraisers and donors.
The very limited government support available means that families like mine need your assistance. I would ask you to contribute in whatever way you can tonight to give all of our boys the chance for longer, healthier and happier lives. As Sam Cooke once sang, ‘a change is gonna come’.
Look what has been achieved in finding drugs to treat Aids. Look what has been achieved in fighting children's leukemia. Now let's sort out Duchenne Muscular Dystrophy. There's no excuse. It's time to stop wasting.
I live in North London with my wife Abbie and our son Thomas, aged 6.
A fabulous new cook book featuring recipes from well known personalities in the Jewish community...
I've set up a facebook group - please join and spread the word!
http://www.facebook.com/?ref=logo#!/group.php?gid=134496636577039&ref=ts
09:51, 23 Jul 09
hi mark, it would be great if your relations want to come along to the robin hood marathon this september, im sure there will be plenty of buckets to hold! x x
10:54, 17 Jun 09
Thanks for the comment Mark, good it see you appreciate the finer music in life !!! Ploughing forward now with PR regarding the gigs we have coming up so fingers crossed. Take care.
04:57, 10 May 09
Hey Mark, great to meet you yesterday, and loving the page you have built here! Just going to read about your cookbook, sounds fabulous!