We lost our beautiful Elle in January. Elle had Cystic Fibrosis. During her 12 years with us she did amazing things to raise awareness for The CFTrust and Organ Donation. If you met her, you’d fall in love with her. Her spirit, determination and utter bravery at every point taught us all lessons we will never forget.

Due to contracting a particularly nasty bacteria (Micro Bacterium Absesses) Elle needed a double lung transplant to be given any hope of survival.

She received her lung transplant in Feb 2017 and we all hoped she would be given a chance to run and breath freely. Unfortunately this was not to be. For nearly a year Elle bravely fought to beat the bug, she lost her beautiful hair and her hearing...but never that smile.

Both the medical team at Gosh and Elle threw everything they had at this bug. The medical world was watching and waiting and hoping, her treatment was somewhat pioneering and they knew if anyone could beat it, Elle would put up a worthy fight.

But this bacteria is cruel and unforgiving. Resistant to antibiotics, even the strongest most potent treatment couldn’t rid Elle’s body of it.

She went through so much, and we know the teams at Gosh have learnt from her story. Her consultants don’t want to put other CF patients through the journey Elle endured. Her sacrifice has taught us that we need to think differently about Micro bacterium abscesses.

There needs to be a huge amount of research into finding an antibiotic that is successful against this bacteria. It is the only way children like Elle have a chance to live. 

2 such children are Thomas and Charlie, they are brothers and are battling CF.  Their stepmum Katy is also completing the walk to raise funds and awareness for CF and the CF Trust.  Thomas and Charlie both have the commonest type of Delta F 508. Raising money for the trust gives them more of a chance of living their life to the fullest , Katy saw Elle’s story and wanted to get involved as originally from Nantwich and they have all followed Elle and her Mummy’s story. 

All our fundraising in Elle, Thomas and Charlie’s names will be going to The CFTrust and particularly funding research into beating the bacteria that Elle battled along with research into drugs to help improve and prolong quality of life for sufferers like Thomas and Charlie. 

Elle’s mum, Thomas and Charlie’s stepmum and friends are taking part in Great Strides - walking 40 miles in one day to raise money and awareness.

Please give generously, and help us to continue Elle’s quest of ‘beating the bug’ and Thomas and Charlie’s quest for the fullest and longest life possible.

Cystic fibrosis (CF) is a life-limiting genetic condition affecting more than 10,000 people across the UK. It affects the lungs and digestive system and can cause chronic infections and reduced lung function. Currently, half of those with CF will not live past age 41.The Cystic Fibrosis Trust is fighting for a brighter future for people with CF and their families 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.