Meet the Accrington schoolboy fighting back against rare genetic condition – LancsLive

When five-year-old Charlie Fletcher was diagnosed with a rare genetic condition and told he would die without a bone marrow transplant, his parents world fell apart.

It was a huge shock and Im not sure I took much in at all that night, said mother Lucy Hamlin. I just lay in on the bed looking at my little boy, wondering how this could be happening.

Charlie, from Accrington, had been suffering with severe nosebleeds in January 2013 and one Sunday night was taken by his dad to hospital where doctors decided to keep him in overnight.

A few hours later, Charlies parents were told that he had suspected leukaemia - however after further tests he was found to have aplastic anaemia, or bone marrow failure.

The rare, life-limiting genetic disorder causes bone marrow failure in children and a predisposition to gynaecological, head and neck cancers, together with other complications both in childhood and in later life.

Lucy, who works as director of a community interest company, said: I was obviously hugely relieved [that he didnt have leukaemia] but then they said what he did have was AA which was in itself a serious condition.

They couldnt find a reason for the AA so began to prepare him for a treatment called ATG, which resets immunity so the bone marrow can start to heal and make blood cells again.

But it was during another bone marrow aspiration that a doctor happened to notice something about Charlie.

His thumbs had been an odd shape since birth almost as though he had two left thumbs but Id never given it much thought, said Lucy.

However, it turned out to be a major clue, with doctors suspecting Fanconi Anaemia (FA) and explained the ATG wouldnt work and Charlie would need a bone marrow transplant urgently.

Devastated Lucy said: There were no suitable donors. One consultant actually suggested that me and Charlies dad have another baby, although we had split up a few years earlier, but then another told us that even if this was a possibility, we wouldnt qualify for IVF.

And in any case, Charlie didnt have nine months to wait. In fact, said the doctor, without a bone marrow transplant he would die.

I thought, How can you just sit there and tell me my son only has a few months to live?

But in May 2013, Charlies parents learned he could have a bone marrow transplant with donated stem cells from umbilical cord blood from a woman in New York.

To prepare his body for new stem cells, Charlie had radiotherapy and chemotherapy to completely wipe out his immune system, so his body would be more likely to accept the new cells. But the transplant failed.

So there he was, with no immune system and no new bone marrow, said Lucy. This was one of the hardest periods in my life, and the uncertainty made it tougher.

We were only meant to be in hospital for a few weeks, but it was another two months, in July 2013, before Charlie could have a second transplant with donated stem cells from New York. This came from a woman whod donated her umbilical cord after birth.

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

He ended up staying in hospital for four-and-a-half 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 was so ill. He had to stay off school for six months after coming home and basically ended up being off for over a year in total. So that meant I couldnt go back to work either the community interest company had only just been set up so I had to put all our plans on hold.

Five and a half years on, Charlie, now age 11, has stayed well, although he will be on antibiotics for the rest of his life to prevent him picking up bugs.

He also has a new half-sister after Lucy had a daughter four years ago.

She said: Charlie has caught up at school and was head boy in his final year of St Andrews primary 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 thats 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 dont 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: Im so grateful for the support of his consultant and the team at Royal Manchester Childrens Hospital, and also for Fanconi Hope, for providing information and linking us with other families in the UK.

Its 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 hell have a ready-made support network.

Jeans for Genes Day is running until September 20. To sign up for a free fundraising pack visit jeansforgenesday.org

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Meet the Accrington schoolboy fighting back against rare genetic condition - LancsLive