A two-year-old boy is the only known person in the world with a deadly condition after he was diagnosed when his left arm started shaking involuntarily just hours after he was born. Oli-Jay Morris, from Haverhill, Suffolk, began suffering from involuntary movements shortly after birth, but his mum Melanie, 36, did not realise the extent of his illness until a "catastrophic" seizure shortly after his second birthday sent him into intensive care.

Weeks later - on August 20 - Oli-Jay's family were given the devastating news that their little boy had EMPF1 - a unique gene mutation medics had never encountered before and for which no cure exists. With Oli-Jay needing round-the-clock care, the family's only hope now lies in a £14,000 personalised analysis by an American firm - sparking a fundraiser to "give him a chance of survival" in the short term and find a cure for the disease.

Melanie, a mother of four, said: "We're spending every day making memories because we don't know how long he has left. Our whole world is tipped upside down."

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Melanie, who is a stay-at-home mum, was overjoyed when Oli-Jay was born on July 21, 2023, weighing eight lbs and six oz. He struggled to sit up, crawl and swallow, but had started making progress when he suffered a sudden seizure. The ordeal began in the early hours of July 31, when the entire left side of Oli-Jay's body began shaking suddenly.

Melanie, who tragically lost her eldest son Jayden at birth 19 years ago and named Oli-Jay in his memory, said: "I had him in bed with me and he sat bolt upright. His whole side started shaking. He was making the most horrific noises."

Emergency services rushed Oli-Jay to the ICU at Addenbrooke's Hospital in Cambridge, where he was placed into an induced coma. During this period, medical staff warned Melanie and dad Rob, 37, that he wasn't responding to treatment and they were "hoping for a miracle" for him to pull through.

"It was just absolutely horrific", Melanie continued. "I was shouting at the doctors like 'please help him, do something'."

Oli-Jay had experienced suspected seizures before, but medics were unsure of the cause and suggested he might have cerebral palsy. Six days after being admitted to hospital, Oli-Jay woke up - but since then, he has needed round-the-clock monitoring, tube-feeding and a mix of 14 medications.

He is unable to speak, cry or move voluntarily after suffering brain damage during the episode. The little one also suffers from dystonia and dyskinesia, as well as frequently needing overnight hospital stays, with his sight, hearing and breathing all impacted by his condition. Melanie and Rob, who are no longer together, have been sharing Oli-Jay's constant care responsibilities with assistance from other family members.

"It's scary for me even to go for a shower because I'm so scared of hearing the (monitoring) machines go off", Melanie, whose living room has become a "mini ICU", said. "I'm just in fight or flight constantly."

On August 20, barely a fortnight after Oli-Jay woke from his coma, his family received the devastating news that he had EMPF1, a deadly condition linked to a mutation of the DNM1L gene, which causes severe mitochondrial disease. He is the only known patient worldwide with his specific mutation, for which there is no cure.

Melanie said: "I was crying and sobbing. They (the medics) admitted they had no idea how to help him and the only thing they could do was treat his symptoms."

All hope appeared lost until Rob, a car mechanic who had been forced to stop working due to his son's illness, contacted the US-based DNM1L Foundation. The charity informed the family about a programme run by American firm Unravel Biosciences, which uses computational biology to study a patient's genetics.

However, they were warned that developing a treatment plan to improve Oli-Jay's symptoms could take two years. They were unwilling to wait that long as they feared the toddler could die at any moment, with his condition expected to deteriorate if things remained unchanged.

So Oli-Jay's aunt Paige - a 32-year-old online content creator - launched a fundraiser to raise £14,000 for a personalised analysis and treatment plan. Since then, more than £11,000 has been raised.

Melanie is aiming to exceed the £14,000 target and find a cure for her son. Any funds raised beyond this goal will be directly contributed to the foundation's pursuit of a solution for all DNM1L mutations.

She said: "As a mum, my hope is for a miracle for my son to be fixed and to find a cure for every child who is suffering."