After a devastating journey, Charlie’s mum describes how it felt to find out that her son may have leukaemia, only to discover he had a far more rare condition. Fanconi’s anaemia has only one cure – stem cells, without which her son would die. Mercifully, Charlie was treated with umbilical cord blood stem cells donated by a generous mum on the other side of the Atlantic.
Now the family are raising money for Jeans for Genes day and Fanconi Hope, two charities very close to their hearts.
“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.” reported Lancashire Live this week.
It was a huge shock and I’m not sure I took much in at all that night, I just lay in on the bed looking at my little boy, wondering how this could be happening.Lucy Hamlin, Charlies mother
“Charlie, from Accrington, had been suffering from 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, Charlie’s parents were told that he had suspected leukaemia – however after further tests, he was found to have aplastic anaemia or bone marrow failure.
This rare, and life-limiting genetic disorder causes bone marrow failure in children. In turn, this lowers the child’s immunity to fatal levels and predisposes them to cancers.
When doctors couldn’t find a reason for the Aplastic Anaemia they began to prepare Charlie for a treatment called ATG, which resets immunity so the bone marrow can start to heal and make blood cells again.
But then a doctor happened to notice something unusual about Charlie.
“His thumbs had been an odd shape since birth – almost as though he had two left thumbs – but I’d never given it much thought,” said Lucy
This turned out to be a major clue, with doctors suspecting Fanconi Anaemia (FA) and explained the ATG wouldn’t 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 Charlie’s 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 wouldn’t qualify for IVF.
“And in any case, Charlie didn’t 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?’”
Cord blood therapy gives family hope
The doctors were thinking and working fast though, knowing that there was another potential treatment. The stem cells Charlie needed aren’t only found in the bone marrow. They are also present in an even younger and more potent form in umbilical cord blood.
In May 2013, Charlie’s parents learned he could have a cord blood stem cell transplant using donated cells – in this case, from a new mum in New York who had donated her umbilical cord blood when her child was born.
“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.” Reports Lancs Live, “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 who’d 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 Charlie’s 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 couldn’t 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 Andrew’s primary school in Oswaldtwistle – a job he took seriously and wore his badge with pride.
“He started guitar lessons but found that his thumbs won’t 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.
Support Jeans for Genes Day
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 until September 20. To sign up for a free fundraising pack visit jeansforgenesday.org
BSc (Hons) Microbiology
Biovault Family CEO, Kate Sneddon, joined Biovault in July 2009 and became Chief Executive Officer in 2016. As health industry professional her experience includes working as a microbiologist and leader at GSK for over 10 years. Her expertise in cord blood banking has been recognised in her awards, features in Parliamentary Review and Parents Guide to Cord Blood, as well as contributions to research with UCL and others.