Archives: cf

The highlight of my day was not (surprisingly) the 6 hours I spent in the car driving to Bristol. I do love long car journeys, especially when it gives me a chance to listen to some of my heavily-stacked Podcast queue, but even 6 hours is pushing the enjoyment factor when I’m in the car on my own.

I did however, love chatting to BBC Radio 5Live Breakfast and BBC West Midlands Drive about the rising CF population and the predictions that it could almost double by 2025. Not sure I agree with the numbers entirely, but we know the number of people being born with CF is relatively stable, so the prediction suggests a definite rise in longevity, which can only be a good thing.

This week on Tuesday it was Kerry’s birthday, then Emily’s, then Jess’s. All three of them no longer with us, all three of them succumbing to the ravages of CF and the complications it brings. The fact that we could be looking at a future where no one is dying from CF is incredibly exciting and definitely brought a smile to my face. What better way to mark their birthdays than helping spread the word about our fight to beat CF for good?

Over the life of this blog, I’ve written quite a lot about CF, it’s affects and my life as well as the lives of others with the incurable condition.

I’m one of the lucky few to have survived and thrived after a double-lung transplant that saved and transformed my life four-and-a-half years ago, but this week is CF Week in the UK and I wanted to see if I could tell a different story.

On Sunday night, a wonderful adopted-Aunty of mine posted a heart-felt, inspiring and moving message to her Facebook friends about her daughter, who has CF. I immediately asked her if I could re-print it on the blog to share with everyone who’s not connected with her.

Happily, she agreed. This post is her words, in full, which are far more eloquent, emotive and impactful than I think I could have managed and, as you’ll see at the end, they sum up everything that SmileThroughIt represents.

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I don’t often go for personal appeals on here, but the CF Trust‘s recent funding crisis has lead me to write something – to do anything – to help in any way I can.

For years the CF Trust have been pioneering key work in the field of gene therapy and have successfully completed the first stages of a clinical trial. However, due to the current climate and all kinds of funding being slashed, they now nned to find £6million before the end of October.

They’re doing amazingly well, but they need to demonstrate the support of the wider CF community to leverage the private donations from the business community they have lined up.

While crowdfunding for your arts projects are all the rage just now, I implore you to dig into you pockets as deeply as you can and donate anything you can to make these trials happen.

I am hugely grateful for the life I have lead and I can honestly say I wouldn’t change any of it; to change my past would change who I am today.  But in the same breath, I would never wish the things I’ve been through on anyone.

That’s why the work of the CF Trust is so important. Babies being born with CF today face a far better prognosis that I did in 1982 and if the gene therapy work comes off, there will be no need for people with CF to ever face some of the stark and scary issues and choices that were placed in front of me.

You’ll get no perks, no T-shirts, badges, producer credits or invites to the premiere. All you will get is the satisfaction in knowing that you’ve helped a great number of people and families to have a better life and a better future.

If that’s not enough, I don’t expect you to donate – I certainly don’t want to make you. But if it’s a choice between an indie blockbuster looking for finishing fund or a chance to change the world, it’s going to be that latter for me every time.

Click here to donate now, whatever you can give gets us one step closer.

This is Jo. She was a very close friend of mine.

She was waiting for a double-lung transplant, just like me.

She died in November 2009.

She is missed.

Sign the Organ Donor Register.