Shaping the future of cystic fibrosis

13 February 2017

In 2011, my husband and I were shocked by the news that our three week old baby Ellie had been diagnosed with Cystic Fibrosis.

Although Ellie had an early arrival into the world, as two unknown carriers of a cystic fibrosis gene we had no idea about the future that lay ahead for our little girl.

Many people deal with a diagnosis in different ways and I am sure none of them are wrong. We took huge comfort in learning everything we could about the condition and the research that is going on to improve the prognosis for those living with cystic fibrosis, both now and in the future.

Cornerstone of support

Therefore the cornerstone of this for us was the Cystic Fibrosis Trust. A font of all knowledge at a touch of a button, any time of day or night, through their website when you just needed information and reassurance of the fantastic work and progress being made.

However we also found access to their helpline a real life saver for both emotional support and practical guidance around a whole new world of disability living allowance, holiday insurance, sending my child to school and everything else I didn’t know the answer to.

Bettering a life for everyone

To be honest to my shame I didn’t even have a Will before I considered writing one after seeing the Free Wills campaign the Cystic Fibrosis Trust was promoting.

It really made me think about what Ellie’s future would look like after I was gone and how I could take immense comfort from playing my part in bettering a life for everyone with cystic fibrosis.

For me, I made one call and a few days later I was meeting with a hugely empathetic solicitor who gave me so much invaluable advice and actually made me feel very positive about my family’s life beyond mine.

A life unlimited

I am not a researcher or someone who can play a direct role in improving the outcomes in cystic fibrosis. But I know that the gift I have included in my Will can be used to provide support, research, information and campaigning for those affected by the condition and work towards a life unlimited by cystic fibrosis.

Therefore I can’t recommend enough to everyone leaving a gift in their Will to a charity you care about. Doing so means you will make a huge difference to the lives of many others.

Jessica, Cystic Fibrosis Trust supporter

Find out more about leaving a gift in your Will.