Ezra, two, is living with a rare genetic condition
Ezra Fletcher, two, of Hessle, meeting a friendly sheep(Image: Laura Mattinson)
An East Yorkshire mum living with the knowledge her young son may not survive beyond the age of three has said he is “writing his own story”. Laura Mattinson was speaking to Hull Live as the annual World Mitochondrial Disease Week was drawing to a close.
Her son, Ezra Fletcher, was diagnosed with the rare genetic condition, Leigh’s disease, when he was 16 months old. Leigh’s disease is a mitochondrial disease that is complex and life-limiting, causing seizures, developmental delays, heart issues and breathing difficulties.
Laura, of Hessle, is petitioning for expansion of prenatal care and provision of broader genetic testing options so that mitochondrial disease may be picked up sooner in mums-to-be. Laura said she was “so pleased” to see that both Ferens Art Gallery and The Deep in Hull were lit up green, earlier this week, to raise awareness of mitochondrial disease.
“We have learned to live life day-to-day.” said Laura. “I am just on edge because, with Ezra’s birthday drawing closer – he’s three in December – that fear is always going to live inside you.” Life expectancy for children diagnosed with Leigh’s disease is usually no more than two or three years.
Laura said: “Ezra is stable at the moment, he’s doing really, really well. He’s having regular physio sessions so his head control is now improving.
“He is learning to sit up, almost to the point where he can sit up unsupported. Ezra’s had a couple of hospital admissions with his chest – he was working a bit hard to breathe last weekend so it was a bit of a scary time – and he’s on long-term antibiotics.
“We try not to worry about what the doctors say and we go on based on what Ezra is like. He’s writing his own story.”
Laura said her son loved being outdoors and “seeing trees”. “He’s really enjoying food,” she said.
“He’s still on a mashed-up diet but he’s been eight months without his feeding tube. He loves chocolate pudding, stuff like that, and we let him have everything he likes within reason.
“It’s so nice for us to enjoy food as a family now. We can go out and he can enjoy things with us and not be tube-fed.
“Even when he’s been in hospital it’s like he’s flirting with the staff. He gives them these big cheesy smiles.”
Ezra was diagnosed with Leigh’s disease after “countless visits to specialists”. When he was born in December 2023, all appeared to be fine for the first seven months, but after a bad bout of bronchitis, he “still wasn’t himself”.
Laura’s petition page is seeking broader genetic testing for all pregnant women from 12 weeks. Laura has previously said had genetic testing been available to her, and conducted earlier, Ezra “might have received the right treatment and support sooner, potentially improving his quality of life”.
Laura said: “I do know the NHS is currently screening for 200 genetic conditions but mitochondrial disease is still not one of them. It’s my intention that it is, and it will be good to see it being tested for so that medical intervention can start from birth.”
Her petition currently stands at 1,253 verified signatures. It will need 10,000 signatures for the issue to be considered by Parliament.
Laura said: “It’s still a long way off but the more I can put it out there the more people I can reach and also raise awareness.”
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