Sunday 17th May
Cystic Fibrosis month, charity cricket match and head shave looming !!!
I thought I'd start by raising a bit of awareness as it's cystic fibrosis month. I want to emphasise that what I write below is my own experience of CF and no two people are the same, some are affected worse than others. I don't in any way want to upset anyone but I am trying to raise awareness of the illness so that when people hear cystic fibrosis they may remember this and make a donation. This is the only way CF will ever stand for cure found.
Statistically, each week five babies are born with CF and two young lives are lost to the illness. The median life expectancy is now 41 although when Rebecca was born it was teenage years, so good progress has been made, however, only HALF of those people suffering with CF will live to that age.
Cystic fibrosis is a lifelong illness that affects mainly the lungs and digestive system but in reality because of the constant treatment required to keep it stable, it actually can impact on the whole of the body. I know from Rebecca, she had gall stones, her kidney's played up, she had starting's of osteoporosis, her bowels gave her problems and she was always being checked for CF related diabetes. She suffered with clubbed fingers, was hunched over through coughing, had a barrel chest and her hair came out in handfuls, not necessarily life threatening but can have an affect on appearance and confidence. Add into that having to deal with constant hospital admissions, appointments, intravenous antibiotics and the knowledge you will more than likely only have a short life. All this becomes part of a life where even though you want to pack as much as you can into this short life, you have to deal with constant disappointments because CF interferes with your social and working life. Really there is no normal life just the best you can make it. As a family you just get on with it deal with whatever is thrown at you and live in the hope of a cure or as is happening now, better treatments are coming along. It's a constant battle over a long time and is at times extremely hard to deal with.
Until a cure is found lung transplant is the main hope of extending life but unfortunately, not everyone is eligible nor does it always work. For that reason we must push forward to raise money and awareness to find a cure and allow approximately 9000 people with CF in the UK live a LONG normal life.
Having said all this I wouldn't have missed the time I had with Rebecca, it was wonderful, a rollercoaster and at times I think we were all close to going over the edge, but if CF did anything good, it gave us the closest, most amazing relationship any mother could wish for. I loved Rebecca with every beat of my heart and still do and I have a note which she wrote in the last months of her life that told me and Paul just how much she loved us. She was a special girl who through her own determination didn't let CF spoil her life too much until she had no choice and then and only then, did she let it win.
So, onto fundraising, here's my just giving site https://www.justgiving.com/Sue-Marley-MBE2
On here you'll see I'm having my head shaved at the annual charity cricket match on Sunday 21st June. Please visit and donate if you can and come along to the cricket match at Ackworth cricket club, Wakefield Road Ackworth, it's a great day and hopefully we'll raise hundreds of pounds for CF all in memory of my lovely girl.
I'm a bit up and down at the moment as Rebecca's anniversary is coming but I've got the cricket match to focus on and the head shave to worry about so hopefully that will see me through.
Bye for now and as always, thank you for taking the time to read my blog :)
Sue x
