Family’s tribute to ‘handsome and happy’ Charlie, 6, who died from mitochondrial disease
- Credit: BECKY NICHOLLS
The mother of an Ipswich schoolboy has told of the devastating loss of her “handsome and happy” son Charlie who was “always smiling”, after he tragically died at the age of six from mitochondrial disease.
Charlie Nicholls, who went to Thomas Wolsey Ormiston Academy in Ipswich, died six weeks ago at the East Anglia’s Children’s Hospices (EACH) after suffering from gut failure, which was secondary to his mitochondrial disease.
His family, from Stratford St Andrew, a village outside of Saxmundham, hope to raise awareness of the “devastating” illness, which is caused by mutations in mitochondrial DNA meaning bodies are not provided with the energy they need.
His mother, Becky Nicholls, said it has been an awful rollercoaster for her and her husband Wayne and their three children Freddy, 10, Max, 12 and Ruby, 13 - and they are doing all they can to keep Charlie’s memory alive and to raise funds to help find a cure for the awful disease.
She said: “Finding out he wouldn’t make it was devastating. It’s the words no parent ever wants to hear. You don’t want to believe it, you wish there was something, but there is no cure, and no hope.
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“There is nothing you can do but watch your child slowly get worse and worse until they are gone. It’s horrible. With cancer you do have a chance, you’ve got hope. But with mitochondrial disease you have nothing.”
Charlie, who would have been seven in January, was less than a year old when he started to have some health problems, developing an eye condition called nystagmus - which meant he was registered as partially sighted and would never be able to drive.
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By the age of two, he wasn’t meeting his milestones and was sick all of the time, suffering from a bad reflux and getting the nickname of “chuck-up Charlie”.
He never properly managed to walk independently, and quickly lost the ability to say the few words he had learnt.
Mrs Nicholls said the next few years involved trips to and from hospital to try and investigate what was wrong with Charlie, involving operations, muscle and bone biopsies, and lumbar punctures. Doctors thought he had mitochondrial disease but couldn’t quite locate the gene to give him a definite diagnosis, which was later found to be Leigh disease.
Leigh syndrome (also known as Leigh disease) is a mitochondrial disease that typically affects development of movement, posture and mental abilities. Leigh syndrome is caused by a number of different genetic mutations found in either the nuclear or mitochondrial DNA and so can be inherited in many different ways.
At first, Charlie was able to “cruise around” with a walking frame - but Mrs Nicholls said he had no understanding of danger and would climb in every space, cupboard and window that he shouldn’t.
She said: “Charlie was a big wrecking ball, everyone used to say he leaves a trail of destruction and he would never sit still for a second.”
Charlie started to decline rapidly in the summer of last year, losing his ability to walk or use his walking frame at all, no longer being able to sit up or control his head independently.
Mrs Nicholls said it was a “rollercoaster of him getting worse and worse”, losing his ability to feed and having a feeding tube inserted, spending more than 12 weeks in hospital over the last year.
Charlie tragically died at the EACH Treehouse Hospice in Ipswich on Friday, October 16 of gut failure, just days after he began vomiting continuously at a routine hospital appointment.
Mrs Nicholls said: “Charlie was a massive part of a lot of people’s lives. He was the most handsome little boy and was always smiling.”
“He has been a big inspiration to a lot of people, as no matter what he was going through Charlie did everything with a huge smile on his face. If Charlie can smile his way through life, anyone can.”
Over the years Charlie’s family has been documenting his crazy antics on Facebook and Instagram, under the Charlie’s Mighty Mito Journey pages.
They are using these platforms to help raise awareness of mitochondrial disease and to keep Charlie’s memory alive.
“Everyone knows about cancer, but hardly anyone knows about mitochondrial disease,” said Mrs Nicholls, aged 36.
“It massively needs some publicity and awareness, which is why it’s so great that Coronation Street is currently running a story about a little boy that has mitochondrial disease.”
The Nicholls family and friends have raised more than £4,000 for the EACH and said that staff at the Ipswich Hospital have been a “lifeline” over the years.
The Nicholls family are also receiving support from The Lily Foundation, which is a UK charity dedicated to fighting mitochondrial disease, who they have raised money for over the years.
Mrs Nicholls said: “The hospice went above and beyond to provide us with a safe haven despite the pandemic and nothing was too much trouble.
“The staff were phenomenal, they took us all in and our three kids so we could spend Charlie’s last few days together, making memories with arts and crafts, feeding us and supporting us.
“Staff on the Bergholt ward at Ipswich Hospital were also amazing, looking after Charlie and myself as we were there so often.”
Charlie’s memory will live on forever at Ipswich Hospital in the form of a cleaning robot, named Dooley, which was named by Charlie after he won a competition run by the hospital. Dooley was one of Charlie’s many nicknames, given to him by his brother.
The family has also started a painting rocks project, called Charlie Bear Rocks on Facebook, to keep Charlie’s smile going around the world – with people painting rocks and sharing them online from Saudi Arabia, Dubai, Canada and New Zealand.
They would love as many people as possible to join and tale part, and welcome anyone to follow Charlie’s Mighty Mito Journey on Facebook.