Sometimes it can sort of interfere if I want to go out but i'm not feeling too well, then
obviously I need to stay home and I need to get extra medication done in order to stay
on top of my lungs because if it starts to deteriorate it's a lot harder to pick back
up than it is to maintain it.
I was 30 when Beth was born and at that time the life expectancy for cystic fibrosis was
31. So I can remember thinking, I haven't done everything I want to do. I've got three
young kiddies and actually my life is supposed to start with the family and all the rest
of it and this isn't what I want for my children.
Beth was diagnosed with cystic fibrosis when she was 6 weeks old. She was born at home
and was quite poorly right from the outset but as we had two older children that both
were healthy we had no idea that cystic fibrosis was in our family, which is quite common.
My husband, Graham, and I both carry the faulty gene. So we had a 1 in 4 chance of any of
our children being born with CF.
I affects the majority of your organs and your body. Mainly involving the lungs, so
you get a build up of thick mucus in your chest and it's a lot harder to clear and it
sort of sticks a lot more than the average person's would.
Also, my pancreas it doesn't produce the right enzymes that you need to digest all your food
and fats within the food, so I have to take tablets. As an artificial enzyme they will
digest my fat.
At Great Ormond Street I was asked to go into a research programme investigating the effects
of exercise on CF and lung function in CF patients.
The first time I saw Beth she was very nervous. She was very shy, very quiet. Her fitness
levels weren't the best. She would have to pause within 3 minutes, 3 to 5 minutes and
have a break. Now we're able to constantly train for 10 - 15 minutes without having a
break.
Her fitness levels have gone up hugely, she doesn't get sick as much. She is also much
more confident, which I think has come through boxing. She's improved massively.
So the exercises involved would be we go through phases. So we would do a warm up round, where
it would just be straight punches, just continuous punching just to warm our hands up and then
after that we'd go into combinations and that will involve defensive work, which is rolling
under, slipping my punches and her counteracting it.
I've been boxing for about a year now. It has shown a clear improvement in the effects
it's had on my lungs. My lung function has stayed at the very high level and has even
sometimes improved.
You can't just make them do exercise that other people can do. You've got to think about
how they're going to recover, which I do with my PT clients but this is different. Just
from the way they get sick a lot easier. They can't train as intensely as other children.
So it's a lot more complex but it gives a lot more to think about.
He knows that I'm doing well, he works hard to maintain it at that level which is really
nice.
I think that I'm more confident in things that I'm doing even just generally going to
school, I feel like because I've shown progress so much through the training that I can progress
in everything else and I feel more determined to do well.