Ezra has mitochondrial disease – a complex, life-limiting condition – which his parents want to raise awareness of
A Hull-area couple have spoken out about their son’s rare illness and have urged the community to rally round to raise awareness and help with vital fundraising. Ezra Fletcher has mitochondrial disease which is a complex, life-limiting condition.
Mitochondrial are like little battery packs inside almost every cell in the body converting food and oxygen into energy and, if they don’t work properly, they can have a major impact – especially in major organs which need the most energy – on general health. Around one in 5,000 people suffer from the condition which makes it one of the most common genetic ones – the number of sufferers is similar to cystic fibrosis and motor neurone disease yet mitochondrial disease is barely known.
My Mito Mission is a unique charity in that it has a central office in Elland, West Yorkshire, which provides awareness, support and fundraising but people around the country faced with mitochondrial disease, like Ezra, set up their own Mito Missions to raise awareness within their communities with any money raised going back to My Mito Mission to help people nationwide affected by Mito.
When Ezra was born in December 2023 to Laura Mattinson and Josh Fletcher all seemed fine for the first seven months and he was always a happy baby. He developed a bad case of bronchitis and the illness really took it out of him, so much so that he needed steroids.
Laura, 33, of Hessle, said: “He sadly still wasn’t himself and then, just as he started to recover, he caught croup. He would no longer sleep on his front, stopped rolling over and he had been starting to crawl but this stopped too.”
Ezra also had vacant episodes when his body began to shake but this was attributed to infantile shudder syndrome – but then he stopped crying. Laura added: “Near Ezra’s first birthday we took him in for his vaccinations. He didn’t cry or even flinch at these. The nurse who administered them said she hadn’t seen a baby who didn’t cry when they got injections in the 20 years she’d been working.”
The family’s health visitor became concerned about Ezra not hitting his milestones. Ezra was seen by a paediatrician at Hull Royal Infirmary who mentioned they’d always been concerned about Ezra’s head size being too big and continuing to grow. He also kept tilting his head to one side.
Ezra went for an urgent MRI scan in April 2025 which found changes to the back of his brain in the white blood cells and fluid in his brain. He had lots of invasive blood tests and, when they asked about the family’s medical history, Laura said her mum, Angela, had adult-onset Leigh’s syndrome – a rare mitochondrial disease which affects the central nervous system – and the family was referred to a specialist NHS mitochondrial clinic in Newcastle.
Laura said: “They were very informative and it was an intense experience, but we started to understand more about what was happening to Ezra.”
Sadly, many babies diagnosed with mitochondrial disease at such a young age don’t survive for many years and Laura has been warned by doctors that Ezra could ‘suddenly go downhill fast.’ Laura has since been tested and is a symptomatic carrier so mitochondrial symptoms could surface in her at some point.
Ezra has had problems with swallowing and so has been tube-fed since May as a precaution but he’s now back on pureed food with the hope that he will soon be able to eat again and the tube removed. Although he has developmental delay, he is thriving at the moment.
“He’s doing really well,” said Laura. “Since he started on some vitamins he seems to have really picked up and he’s also getting physio and occupational therapy.
“He’s regaining his strength and trying to sit up again and he’s always so happy. He laughs a lot at The Teletubbies and Mr Tumble and loves sensory equipment like feathers and foil blankets. He also weirdly loves holding pieces of cardboard.”
The family’s mission now is to raise awareness about mitochondrial disease. Laura said: “We feel like we always have to repeat ourselves, even telling people the most basic facts about mitochondrial disease so we think it’s so important that people are educated.
“We would love to get some people together and do some charity fundraising days. It will be great if others can support Ezra’s Mission too.”
Medical experts agree that Mito dysfunction and its research and treatment could benefit potentially millions of people worldwide with a range of other illnesses.
Mitochondrial dysfunction is now known to be a factor in some of the most common and well-known medical conditions and diseases such as autism, cancer, obesity, hepatitis, dementia, diabetes, epilepsy, fibromyalgia, heart disease, motor neurone disease, MS, Parkinson’s, sepsis and stroke.
Prof Grainne Gorman, professor of neurology and former director of the Wellcome Centre for Mitochondrial Research at Newcastle University, says: “Mitochondrial dysfunction is the root cause of potentially hundreds of other disorders, not only primary mitochondrial diseases.
“My vision is that by investing in mitochondrial research we can also potentially help research into other conditions.”
To help Ezra and his family go to https://www.mymitomission.uk/ezras-mito-mission-hull/