Laura Mattinson and partner Josh were told in June that their little boy, Ezra had an incurable condition
A mum who was told she was suffering from “new mum anxiety” discovered her baby had a rare incurable disease, after doctors joked he merely had “happy baby syndrome”. Laura Mattinson, 33, and her partner, Josh, 32, were given the heartbreaking news in June 2025 that their one-year-old son, Ezra, had Leigh syndrome – a neurometabolic disorder affecting only one in 40,000 newborns globally.
The couple became suspicious when they noticed Ezra started “unlearning” his milestones at eight months – suddenly unable to sit up, talk and crawl – and he never cried. However, Laura says GPs simply told her to “relax” and humorously suggested he was suffering from “chilled, happy baby syndrome”.
Following an MRI scan on April 15, 2025, which revealed abnormalities in his brain, Ezra was officially diagnosed with Leigh syndrome two months later. The condition leads to the progressive loss of mental and movement abilities, and the couple were informed that even a common cold could be fatal for him as his body lacked the strength to fight it off.
Now, Laura is concentrating on creating as many memories as possible with Ezra and hopes to take him to Disneyland before his third birthday.
Laura, from Hull, shared: “Ezra started life hitting his milestones as normal – he could talk, sit up and was beginning to crawl. The first thing we noticed, even though he was never a big crier, was that he just stopped crying completely.
“Doctors just told me I probably had new mum anxiety and joked he had happy baby syndrome – one even asked why I was ‘so bothered about him crying’. It’s devastating because, if we hadn’t been dismissed so early on, we could’ve known sooner.”
Until he reached eight months, Ezra was developing normally, even picking up a few words like ‘dad’, ‘hiya’ and ‘bye’. However, his progress began to falter by April, with the tot only able to babble and lie on his back.
Ezra also suddenly stopped crying, which raised concerns for Laura and Josh that he might be in pain. They claim they visited the GP at least four times before receiving a diagnosis.
“He started regressing,” Laura said. “Ezra was unlearning all the things he already knew – like sitting up independently and speaking.
“At seven months, he started trying to crawl – but that stopped, too. We were so worried about him being in pain.”
After feeling “dismissed” by doctors, a nurse noticed Ezra’s lack of crying during his one-year vaccinations. She stated it “wasn’t normal” for babies not to cry after being injected and decided to refer him to Hull Royal Infirmary for further tests.
An MRI scan on April 15 revealed changes to the back of his brain, confirming he wasn’t just a “chilled baby”.
Laura said: “The paediatrician explained there were changes but wouldn’t say what – I automatically thought the worst. Josh and I went in to see him and were told it could be mitochondrial disease. I didn’t want to know too much.”
Doctors started genetic testing on Ezra, which indicated Leigh syndrome. Before they could test Laura, she informed them that her 65-year-old mum had recently been diagnosed with adult-onset Leigh syndrome, despite being symptom-free for most of her life.
Adult-onset Leigh syndrome, which can affect anyone over the age of 18, is incredibly rare, with only a handful of cases diagnosed globally, according to the National Library of Medicine. While Leigh syndrome primarily affects newborns, adults can also be affected.
“Mum’s been asymptomatic for a long time,” she said. “She got a diagnosis at the age of 60 after developing a bit of weakness in her arms and legs – she’s also partially-sighted and partially-deaf now.
“After I told the doctors about mum, they said they didn’t need to take the genetic testing any further. But, as we want more kids, I took a test on July 28 to see if I’m a carrier, or if I have it asymptomatically.”
Laura, unlike her mum, was given the heartbreaking news that Ezra might not live past his third birthday – even a common cold could lead to end-of-life care. The devoted mum has launched a fundraising campaign to create as many precious memories with her little one as possible, including a dream trip to Disneyland for his second birthday in December.
She said: “They say babies with Leigh syndrome don’t tend to live past three. Josh and I have lost a lot of money coming out of work, and we want to give him the life we could’ve afforded had we not left.”
The fundraiser is currently active on GoFundMe.