Monday, 10 August 2015

Cystic Fibrosis Strawfie

I posted this because my daughter Lucia has CF, which causes mucus to build up in the lungs and other organs . It is a life-shortening genetic disease, but your donation could make such a difference, as therapies are being developed all the time.

When I did it I could only manage about 10 seconds before I started panicking for lack of air. I felt upset and worried that Lucia might one day feel like that. It really made me feel grateful for just breathing normally.

I would love it if you could donate, even without doing a #strawfie , although I'd love to see that too!

WHY DO A STRAWFIE?
The action of breathing through a straw, while pinching your nose, emulates the daily struggle to breathe experienced by people living with cystic fibrosis.

HOW TO TAKE PART:
Take a selfie of yourself breathing through a straw with your nose pinched (a Strawfie) and post online (Facebook/Twitter/Instagram/blogs) with a comment about how it made you feel....
Donations: Text BWCF64 £3 (or other amount) to 70070 or visit https://www.justgiving.com/TWF-breathewithme/

Nominate 3 friends to try the Strawfie Challenge in aid of the Cystic Fibrosis Trust

2 comments:

  1. Matt, I was very touched to read that Lucia has CF. A family in my last parish had a son, now well into his twenties, with it, and an old altar server of mine married a girl with CF. So I have a certain interest in it. Please forgive, though, that I'm not going to do your 'strawfie'. I suffer from asthma to some degree, and I know well how frightening it is to be unable to breathe. If there is anything I can do to support you, you have only to say.

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    1. Thank you Father, it was a real shock when Lucia was diagnosed with it, perhaps amplified by my ignorance of what it was. We've obviously learnt a lot about it over the last 18 months, and being able to stand back from it a bit more now, I find it interesting, in the sense that there is such a wide variation in the way it manifests. Some people are lucky enough to not get any major problems until later life, others have things tough from birth. Lucia has been fairly lucky, and her combination of genes can result in milder versions. The other thing that is fascinating is the range of therapies beginning to be available for it.
      Thank you again for your kind words.

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