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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