Cystic Fibrosis Trust

We're raising money in aid of Cystic Fibrosis Trust and every donation will help. Thank you in advance for your contribution to this cause that means so much to us. These donations are dedicated to Jordan and Carl.  

The Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited by cystic fibrosis (CF) for everyone affected by the condition. Since we started in 1964 we have dedicated ourselves to promoting excellence in research and clinical care, as well as providing practical support and advice to people with CF and their families. Our mission is to create a world where being born with CF no longer means a life-long struggle.

What is Cystic Fibrosis?

Cystic fibrosis (CF) is a genetic condition affecting more than 10,500 people in the UK is one of the UK's most common life-threatening inherited diseases. Cystic fibrosis is caused by a defective gene and affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing.

The Cystic Fibrosis Trust are working towards a brighter future for everyone with CF by funding cutting-edge research, driving up standards of care and supporting people with the condition and their loved ones every step of the way. Your donation can really make a difference.

 More information can be found here: https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis

 Why are we raising money for Cystic Fibrosis? 

Lauren's Story: 

 I am raising money to honour my brother Jordan, who I sadly lost 3 years ago to Cystic Fibrosis. He was diagnosed with CF from a very young age and underwent a double lung transplant in 2003 at the age of 12, which gave him a new lease of life.

Unfortunately he suffered rejection of the lungs in 2006, but he beat all the odds and lived much longer than any doctor expected. He fought his battle with CF for another 10 years before he passed away a few weeks before his 25th birthday in 2016.

Jordan was aware of his limitations due to having CF, however he did not let that stop him from living life to the full. The way he coped with this relentless disease without complaint was truly remarkable. He was the most inspirational, positive and brave person I have ever met and he still inspires me today. He will be forever missed.

Marion’s story:

Carl was my first long relationship going back 25 years ago, and to say the least, I wouldn’t be who I am today if our lives hadn’t crossed. He was a very special person, creative and passionate, was the manager of a graphic design agency in Richmond, and had received a British Fantasy Award for his fanzine, Dagon.

 Carl often had medical issues, and had escaped death a few times already by the time I met him. He was only diagnosed with Cystic Fibrosis at the age of 32 following suspected pneumonia. This turn of event and this knowledge was a huge shock for all of us, as it is extremely rare for someone with his condition to live that long in the first place, and we knew it would eventually be a death sentence. Despite our relationship ending a few years later, we remained friends.

His health finally collapsed completely and he spent most of his life between his flat in Twickenham, attached to a bottle of oxygen and the Old Brompton Hospital, where, thanks to the CFT and the team of expert doctors and nurses, he received great care.

 He was also on the waiting list for a lung transplant, but constant infections wouldn’t allow him to see that day, and he passed away on the 13 November 2017, leaving a big empty gap in all of our lives.