Wednesday, 17 October 2012


We all ended up having a really nice holiday in Wales in our relation’s cottage which it was really great to be able to use. Mum and Dad used to go there before we three had arrived and we kept on going until I went into my wheelchair and I couldn’t climb up the steps. I will tell you more about our holidays there as time goes on. Alistair, on this holiday, was only about 6 weeks old and was still being fed by mum and he still kept making his silly breathing noises, but he seemed fine so nobody worried too much. It’s amazing when you are dealing with something like muscular dystrophy other things don’t seem half so significant!

When we got back from our holiday the OSO decided she ought to start running again, I mean she hadn’t got much else to do! I have not really explained before, to those of you who don’t know my Mum, that she is somewhat of an activeoholic if you know what I mean, she’s not so much got ants in her pants, but a whole colony of them in her knickers. She has always has always, and I suspect, will always be the same. Apparently when she was little my granddad used to say to her on frequent occasions

‘If you can sit still and keep quiet for 10 minutes then you can have a threepenny bit’ she never got the money, not once!

Anyway, to fill you in a little, she has always loved walking and running and playing sport she had always ridden horses, (she had me on my first ride on a pony when I was about 3 months old, on Zigga who belonged to a friend of my Mum, more of her later!)

So, the OSO decided if she got fit again after having Alistair then she could start running in marathons again(yes she had run in them before) and raise some money for the Muscular Dystrophy Group.

By this time both Mum and Dad had got involved with this group and wanted to do all that they could to help. I think, to be honest they both felt frustrated. Mum in particular,feeling that there was nothing they could do to stop me getting the disease (pretty obvious really as I already had it!) but they did want to help try and prevent other children getting it. At that time, the researchers had only just discovered what caused Duchenne Muscular Dystrophy, the lack of dystrophin and there was quite a good deal of hope that in the future; with a lot more research, they might actually work out how to make it and get it back into the muscle cells where it was needed. Like most charities, the Government did not put any money into medical research of the disease, so it was all down to fund raising to get the money to do it. So that’s what Mum and Dad decided they would do, though Dad drew the line at running, he was more of a committee and an organising kind of person!

They also started looking into the kinds of provision I would need as I got older and more physically weak in the form of housing, schools and aids and adaptations to help me get around more easily, but they were both VERY adamant that DMD would not take over all of our lives and that we were basically just a normal family who happened to have a child with DMD. I don’t know who they thought they were kidding, we NEVER would have been called a normal family, we were all barking mad!

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