4

So after that, it was all rather weird for a time, The OSO did a lot of reading about DMD and other such boring research about what was likely to happen to me. Daft things like Mum remembers what she got for us at Sainsburys to eat that weekend( once she was let out of bed) Slow roast brisket of beef; how bizarre is that!

A week later they went to see a genetics research chappie, very clever, called (oh I suppose I’d better not tell you his actual name) anyhow he was really nice and he and Mum got into deep discussion of how my mutation could have occurred, stuff about gonadal mosaicism, or some such term. Suffice it to say that they had to wake Dad up at the end of their conversation. The OSO swears to this day, that it had something to do with Chenobyl going bang when she was very early in her pregnancy with me. I always maintain it was her fault for being a witch. She said I just mucked up the perfectly good genes she gave me. We have always agreed to differ!

After that Mum had to go for a very detailed scan at ANOTHER hospital. She had to go with a full bladder and then was kept waiting before they did the scan! Flipping heck; she was not a happy bunny. All in all they decided they were 90% certain that the baby boy was ok and that was as far as they were going to get for a guarantee. So Alistair, or baby Frank as to what he became known as was here to stay.

Then things largely carried on as normal, if that is what you could call our family life! Mum got on with all the millions of things she always did and Dad carried on working and being calm and level which is what he always did best. I, really didn’t know things were any different and carried on growing up, with Roger always a bit physically faster than me even though he was 15 months younger than me. Though it has to be said that he was a lot fatter than me, he was always know as Roger the podger which he certainly was!

Obviously all the family were upset, my two Grandmothers and Grandad and my Aunty tried their best to rally round, but at this stage there wasn’t anything they could do. The great thing was that neither the OSO or Dad were scared about disability as such.You have to remember attitudes were a lot different then (not the much more positive ideas about disability which we have now). Mum and Dad had two friends with multiple sclerosis and of course you will remember Mum had worked a lot with people with all kinds of disabilities, so it was generally very lucky that they were not phased about having a son with a disability. I think what they found hardest was knowing that I would not live very long and over my life time I would just get physically worse and worse and there was nothing that they could do about it. Mum much later told one of her friends it was like being told every day that your child had been in an accident and was going to die. But enough of that! Mum, as you probably have realised by now, was a great dooer, so that’s what she did. Claire is one of Mum’s bestest friends and she always maintained that the OSO was like an electric whisk, whilst she, Claire was like a spoon! I always thought that was a brilliant analogy and anyone who knew the pair of them would say that was true.

So, Mum carried on growing Alistair and he grew and grew, just like the very hungry caterpillar until the following May when he decided it was time he emerged into the world.