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.
Life is not measured by the number of breaths we take, but by the moments that take our breath away.
It’s a poignant mantra for our small community – squeezing as much as we can out of life before CF takes its toll on the lungs of our loved ones.
My beautiful daughter Holly is just one of over 9,000 people in the UK with Cystic Fibrosis. It’s the UK’s most common life-threatening inherited disease and affects the internal organs, especially the lungs and digestive system. Each week, five babies are born with CF and each week, two young lives are lost to CF.
There isn’t a cure. There’s no chance of remission. You can’t ‘play the odds’ with CF. However, improvements in treatment and care mean that currently half the CF population will survive well into adulthood. The other half… don’t. There’s no way of knowing into which half Holly will fall.
Instead, we throw ourselves into life while we can… and Holly is a perfect partner in crime! She’s a smart, beautiful, and sensitive girl who shares my passion for adventure. She loves her dancing, swimming, trampolining and getting up to mischief with [her sister] Ruby and her friends.
Yes – physiotherapy, cocktails of tablets, nebulisers, hospital visits and stays are part of our normal routine and have been since Holly was born. Another few tablets are added, perhaps an inhaler, perhaps a few additional tests – CF is a progressive condition, so we carefully ignore the gradual tweaks being made to her care and the extra breath it takes her to blow out the candles on her birthday cake each year.
Holly continues to takes it all in her stride with a smile, a joke and maturity beyond her years and if Holly can do it, so can I. Instead of dwelling on the future we enjoy the moment: sailing down the Grand Canal in a gondola, watching a St Lucian sunset, or just daft little moments: dancing in the playground, waterfights, giggling at a bedtime story.
And there is hope…
The CF Trust is the UK’s only national charity dedicated to supporting people affected by CF. Despite the fact that it doesn’t receive a penny in Government funding, the charity has managed to fund a pioneering gene therapy programme that’s leading the world in unlocking the secret to treating – and beating – CF.
We are tantalisingly close to a product that could save thousands of lives – including Holly’s – with clinical trials due to begin later this year. But work of this kind obviously costs millions of pounds, and our small band of supporters is trying to fund the work during the worse financial crisis in living history!
So this CF Week I’d be grateful if you could consider doing just two things:
- Support the CF Trust – either with a fundraising event or a donation via www.cftrust.org.uk or by simply spreading the word and raising awareness of CF – and keep hope alive for Holly and the thousands like her in the UK.
- Pause long enough during your everyday stresses to enjoy just one breath-taking moment with your children, a loved one, your parents or friends… because ultimately those are the memories you’ll treasure.
Thanks so much to Paula for allowing me to share her amazing pesonal story with you. Paula inspires me every day with the way she happily, positively goes about making the most of not only her own lives, but the lives of her daughters, too.
We can all learn so much from such a strong, inspirational single mum and if you take nothing else away from this blog post, just remember her final words:
Pause long enough during your everyday stresses to enjoy just one breath-taking moment with your children, a loved one, your parents or friends… because ultimately those are the memories you’ll treasure.
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