Laura Mattinson said doctors joked that Ezra had ‘happy baby syndrome’
A woman told she had “new mum anxiety” discovered her baby had a rare incurable disease – after doctors joked he just had “happy baby syndrome”. Mum-of-one Laura Mattinson, 33, and her partner, Josh, 32, were told in June 2025 that their little boy, Ezra, one, had Leigh syndrome – a neurometabolic disorder which affects just one in 40,000 newborns worldwide.
The pair had their suspicions after noticing Ezra began “unlearning” his milestones at eight months – including suddenly being unable to sit up, talk and crawl – as well as never crying. But Laura says GPs just told her to “relax” and joked he was suffering from “chilled, happy baby syndrome”.
After an MRI revealed abnormalities in his brain on April 15, 2025, Ezra was officially diagnosed with Leigh syndrome two months later. It causes the progressive loss of mental and movement abilities and the couple were told a common cold could kill him as his body didn’t have the strength to fight it off. Laura is now focused on making as many memories as possible with Ezra and wants to take him to Disneyland before his third birthday.
Laura, from Hull, said: “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.”
Up until he was eight months old, Ezra was progressing at a normal pace – even learning certain words, like ‘dad’, ‘hiya’ and ‘bye’. But his skills began to unravel and by April, he was only able to babble, and could only lie on his back.
Ezra also suddenly stopped crying – which made Laura and Josh worry he could be in pain. The pair say they took the tot to the GP at least four times before his 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 being “dismissed” by doctors, Ezra’s inability to cry was spotted by a nurse administering his one-year vaccines. She said it “wasn’t normal” for babies not to cry after being injected and decided to refer him to Hull Royal Infirmary for further tests. Ezra was given an MRI on April 15, which showed 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 began genetically testing Ezra and he flagged for Leigh syndrome. Before they had the chance to test Laura, she told them her mum, 65, had recently been diagnosed with adult-onset Leigh syndrome – but had been asymptomatic for most of her life.
Adult-onset Leigh syndrome, which can affect anyone over the age of 18, is incredibly rare, with only a few cases diagnosed around the world, according to the National Library of Medicine. While Leigh syndrome is known to primarily affect newborns, adults may be affected, too.
“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.”
Unlike her mum, Laura was told that Ezra would be unlikely to survive past the age of three – and even a common cold could mean moving to end-of-life care. The mum-of-one has set up a fundraiser to make as many memories with the tot as she can, including taking him 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 on GoFundMe.