The doctors said I was probably a new mom, but my baby had a life-changing illness

When the first mother Laura Mattinson noticed that her son Ezra had stopped crying, she said with her family doctor. But the doctors joked that he probably had “chilled, happy baby syndrome”.

“The first thing we noticed, even though he was never a big crier, was that he simply stopped crying completely,” she said.

“I was told that I would probably have a new mom,” said Laura, 33, from Hull. “A doctor even asked why I ‘so bothered that he was crying’.”

But Laura knew something wrong. Ezra had hit his development milestones, sat up, crawled and said his first words until about eight months old. Then he suddenly started recessions.

“He learned all the things he already knew,” she says. “He stopped crawling, stopped setting up and could only chatter.”

Although Laura brought him to the family doctor at least four times, they were “dismissed” until a nurse noticed something during his one -year vaccinations.

A shock diagnosis

After Ezra hadn’t cried during his injections, the nurse marked that it was not normal and referred him to tests. An MRI scan in April 2025 showed changes in his brain.

A few weeks later, the family received the news that they were afraid: Ezra had Leigh Syndrome, a rare, incurable neurometabolic disorder that only affects around 40,000 newborns worldwide.

“We were told that a cold could kill him,” says Laura. “His body just doesn’t have the strength to fight him.”

Leigh syndrome – a mainly genetic mitochondrial disease – causes a progressive loss of mental and movement skills. It affects babies and small children most frequently, with the symptoms normally begin in the first year of a baby. In very rare cases, adults can influence what Erza’s grandmother has happened, in which Leigh syndrome was diagnosed for adults at 60 years after being asymptomatic for decades.

“They say babies with Leigh syndrome don’t live after three years,” says Laura. “It is devastating, because if we had not been released so early, we could have known earlier.”

Fight for answers

The diagnosis also caused Laura to undergo genetic tests. “Since we want more children, I took a test to see if I am a carrier or whether I have it asymptomatic,” she explains.

While Laura’s mother lived most of her life with just a few symptoms – only a certain weakness in her arms and legs and later sometimes vision and hearing loss – Ezra is progressed faster.

In contrast to other babies of his age, he no longer sits alone, and Laura says that even fundamental movements are a challenge. Despite everything, it is determined to make the best of the day every day that they have together.

Make memories

Since his diagnosis, Laura and her partner Josh, 32, have given up work to maintain Ezra full -time. Now you have started a fundraising campaign to create as many memories as possible with your son, including a trip to Disneyland on his second birthday in December.

“Josh and I have lost a lot of money that come out of work and we want to give him the life that we could have afforded if we hadn’t gone,” she says.

Here you can donate to Ezra’s fundraising campaign.

What is Leigh syndrome?

The Leigh syndrome, sometimes referred to as a Leigh disease, is a rare disease that affects the nervous system. It is part of a group of diseases known as mitochondrial diseases that affect the body’s production.

In most cases, the symptoms begin in infancy, but in extremely rare cases, some people in adulthood are diagnosed – like Ezra’s grandmother.

• Leigh syndrome can lead to a gradual loss of physical and developmental skills.

• Children can start reaching their milestones – such as sitting or chatting – but then these skills begin to lose over time.

• It can lead to problems such as low muscle tone, movement difficulties or seizures.

• The disease is primarily genetic and often inherited from parents who have no symptoms themselves.

• The symptoms can vary from person to person.

While there is currently no healing, the researchers continue to examine new treatments.

Additional reporting of SWNS

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