Baby's arm started shaking hours after birth and now he is only person in world with deadly condition

A tot 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, two, suffered from involuntary movements shortly after birth, but mum Melanie, 36, did not realise the extent of his illness before a "catastrophic" seizure shortly after his second birthday sent him into intensive care. Weeks later - on August 20 - Oli-Jay's family found out their tot had EMPF1 - a unique gene mutation medics had never encountered before and for which no cure exists. With Oli-Jay needing 24/7 care, the family's only hope is now 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 mum of four from Haverhill, Suffolk, 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." Melanie, a stay-at-home mum, was over the moon 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 had 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 lost her oldest son Jayden at birth 19 years ago and named Oli-Jay after his late brother, explained: "I had him in bed with me and he sat bolt upright. His whole side started shaking. He was making the most horrific noises." Paramedics rushed Oli-Jay to the ICU at Addenbrooke's Hospital in Cambridge, where he was put into an induced coma. During that time, medics warned Melanie and dad Rob, 37, that he was not responding to medication and that they were "hoping for a miracle" so he would pull through. "It was just absolutely horrific", Melanie added. "I was shouting at the doctors like 'please help him, do something'." Oli-Jay had suffered suspected seizures before, but doctors did not know the cause and suggested he could have cerebral palsy. Six days after entering hospital, Oli-Jay woke up - but he has required 24/7 monitoring, tube-feeding and a cocktail of 14 medications ever since. He cannot speak, cry or move willingly after he suffered brain damage during the episode. The tot also suffers from dystonia and dyskinesia, as well as regularly needing overnight hospital stays, with his sight, hearing and breathing all affected by his illness. Melanie and Rob, who are separated, have been sharing Oli-Jay's round-the-clock caring duties with help 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 two weeks after Oli-Jay woke up from the coma, his family were dealt the devastating news that he had EMPF1, a deadly condition associated with a mutation of the DNM1L gene and causing severe mitochondrial disease. He is the only known patient in the world with his particular 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 seemed lost until Rob, a car mechanic who had to stop working due to his son's illness, got in touch with the US-based DNM1L Foundation. The charity told the family about a programme by Stateside firm Unravel Biosciences, which uses computational biology to study a patient's genetics. But they were warned that a treatment plan to improve Oli-Jay's symptoms could take two years to develop. They were not prepared to wait that long as they worried the tot could die at any moment, with his condition set to worsen if things stayed the same. So Oli-Jay's aunt Paige - a 32-year-old online content creator - set up a fundraiser to raise £14,000 for a personalised analysis and treatment plan. Since then, more than £11,000 has been raised. Melanie hopes to surpass the £14,000 benchmark and find a cure to save her son. But she also wants to help others, with anything raised over the target going straight to the foundation's search for a remedy to 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."