Elle has cystic fibrosis and had a lung transplant in early 2017.

Her news lungs are beautiful and working perfectly, the nasty bacteria that was in her old lungs though managed to find a way back into her body and in November we were told we are running out of treatment options.

Seven months post-transplant we discovered the bacteria had started to grow in her ribs and sternum. Elle had surgery in September to remove the affected area. She was blasted with the highest dose of antibiotics and this meant serious side effects.

Elle is almost completely deaf now and her hearing won’t ever return. She has lost most of her hair apart from a little patch she’s holding onto dearly. Her nausea can be relentless, she can’t eat or keep anything down and consequently she is malnourished and her poor little body is very frail.

Four weeks after the surgery to remove this infected area an MRI scan told us the bacteria is still present and is growing, Elle’s body can’t fight it.

We were preparing to receive the news from Great Ormond Street that we have no other choice but to keep her comfortable and make the most of what short time is left but Elle’s consultants have been discussing her case all over the world to try and find a way forward, and recently we were thrown a lifeline: they have agreed to operate on her one last time. The GOSH team, Elle and her family are going to give it everything they’ve got.

It’s going to be an intrusive surgery, removing more bone and infected tissue, and this time potentially leaving the wound open to heal from the inside. A significant stay in intensive care and many more weeks in GOSH. A super blast of medication to give her body all the help we can to be sure it goes and doesn’t return.

This is our only option left to try and save her.

Elle knows the bug is back, she pictures it as ‘little faces eating away at me’ and she wants it gone. She wants to beat the bug! And most importantly, she wants to go ahead with the surgery, Elle has plenty of fight left in her.

Her biggest upset on hearing this news was the realisation that she would be in hospital over Christmas.

3rd January 2018

We are very sad to say Elle passed away peacefully in her parents’ arms.

Please keep sending cheerful post to her sister Cara.