“The doctor said without a bone marrow transplant he would die”

At first, it seemed the second transplant was also failing. But then it started showing signs of working and Charlie’s blood counts began to rise.

He ended up staying in hospital for four-and-ahalf months and during this time, as he had no immune system, he was in isolation, only allowed four visitors, along with hospital staff.

Lucy said: “Even so, he still contracted meningitis, listeria and MRSA and mary school in Oswaldtwistle – a job he took seriously and wore his badge with pride.

“He started guitar lessons but found that his thumbs wont quite work properly to strum a guitar and that’s uncomfortable for him, so he took up keyboard instead.

“He is an orange belt at jujitsu and is a member of our local scout group – in fact he went away for the first time without family while he was a cub, about two years after coming out of hospital.

“That was an experience for me, having to trust other people to ensure he takes his medication!”

The family don’t know what the future might hold as, despite his bone marrow transplant, FA can mean Charlie, who has now started Year 7 at Accrington Academy, is at higher risk of cancers.

The family are supporting Jeans for Genes Day and fundraising for Fanconi Hope, a national charitable trust set up by parents of FA affected children and clinicians with an interest in FA.

Lucy added: “I’m so grateful for the support of his consultant and the team at Royal Manchester Children’s Hospital, and also for Fanconi Hope, for providing information and linking us with other families in the UK.

“It’s such a comfort to know there are other people who understand, and we can connect online easily.

“Charlie enjoyed the Family Day in 2017 – for him, it was a night away and a fun day. But I think as he gets older, these events will really help him to understand FA and he’ll have a ready-made support network.”

Jeans for Genes Day is running from Monday, September 16 to Friday, September 20. To sign up for a free fundraising pack visit jeansforgenesday. org