Ezra Fletcher is ‘doing all the things they said he wouldn’t do’
Ezra Fletcher, 2, of Hessle, was diagnosed last year with Leigh’s disease.(Image: Laura Mattinson)
An East Yorkshire boy living with a rare genetic condition that was diagnosed when he was 16 months old is “doing amazing”, his mum has said. Ezra Fletcher, two, of Hessle, was diagnosed with Leigh’s disease after “countless visits to specialists” and reassurances nothing was wrong, his mum, Laura Mattinson, said.
Leigh’s disease, a mitochondrial disease, is a complex and life-limiting neurological disorder that causes seizures, developmental delays, heart issues and breathing difficulties. Laura has set up a petition at change.org calling on NHS England to expand prenatal care and provide broader genetic testing options.
On the petition page, she said: “Currently, NHS England doesn’t provide comprehensive genetic testing for all pregnant women from 12 weeks. This gap in prenatal care means that many parents face the same uncertainty and frustration that my family did, delaying critical diagnoses and interventions.”
Laura 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”. Even so, the little boy, currently holidaying in Greece with his mum, Laura, and dad, Josh Fletcher, is defying what doctors told the family.
“He’s doing amazing at the moment, he’s doing all the things they said he wouldn’t do,” said Laura. “He was being tube-fed but he’s come off that and he’s got a standing frame that will hopefully help him to start walking.
READ MORE: Hull-area couple on the rare illness that has struck their young son
“Right now we are focusing on the positives. Last year, when it all came out about his diagnosis, it was all negativity.
“Ezra does have his down days, but we take each day as it comes and go at his pace. He always has such a beautiful smile on his face.
“We’re making as many memories as we can with him. Ezra still might not live past three – he’s three in December – but he’s loving life at the moment.
“Everyone here (in Greece) is obsessed with him. So many of the staff are coming up and saying, ‘may I grab his cheeks’, as he has these lovely chubby cheeks.
“It’s been amazing weather, not too hot. The pool is ice-cold, even I won’t go in, but we’ve got Ezra a rubber ring he can sit in and he loves being outdoors.”
When Ezra 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”. His mum previously said: “He would no longer sleep on his front, stopped rolling over and he had been starting to crawl but this stopped too.”
The tot also had vacant episodes, when his body began to shake, and he stopped crying. Many tests resulted in Ezra’s diagnosis and Laura herself was tested and found to be a symptomatic carrier, so mitochondrial symptoms could surface in her at some point.
On her petition page, Laura said: “We urge NHS England to re-evaluate its current policies regarding prenatal genetic testing. By providing comprehensive tests to all pregnant women from 12 weeks, we can ensure early diagnosis and intervention for various genetic conditions.
“This proactive step will not only save lives but also improve the quality of life for countless children and their families … Together, we can push for changes that will make a significant difference in the lives of future generations.” The petition will need 10,000 signatures for the issue to be considered by Parliament.
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