A mum whose two-year-old son has a medical condition not found anywhere else in the world is trying to raise £14,000 to pay for treatment which could save his life. Everything changed for Mel Morris in the early hours of July 31, when her youngest child Oli-Jay suddenly went into seizures – just two weeks after his second birthday.
He was rushed to Addenbrooke’s Hospital, in Cambridge, and given multiple medications, including anti seizure drugs, steroids, high dose midazolam and precautionary antibiotics, underwent many invasive tests and was placed in an induced coma. Six days later, with medical experts still baffled by the cause of the sudden deterioration in health, Oli-Jay was slowly brought out of the induced coma and the breathing tube was removed. The constant seizure finally eased, but he began to develop new symptoms.
Genetic testing revealed Oli has a De Novo DNM1L gene mutation with a variant that had never been seen before, said his mum, who has three other children; Jordon, 18, Codi, 16 and Tommy-Jay, 11. Oli-Jay has a form of mitochondrial disease, a condition that means the cells in his body are unable to produce the energy he needs to have even the simplest of bodily functions, such as eating, speaking, crying or breathing.
When not having to stay in hospital, Oli is in a hospital bed in the living room of his home in Haverhill, Suffolk, with 24-hour care from his mum and dad, helped by Paige and Dannie, Mel’s sister and best friend. After a diagnosis of EMPF1, specialists from across the NHS were contacted, including neurologists, dieticians, respiratory teams, genetics, a mitochondrial professor from Newcastle, Great Ormond Street specialists, ENT, ophthalmology and occupational therapy.
The condition has no cure, because the genetic variant is unique, no one knows what symptoms may develop or how her son’s condition might progress. Doctors can only try to treat and soothe each symptom as it appears. Oli’s dad, Rob, contacted the DNM1L Foundation in the United States, which arranged a meeting with Unravel Biosciences, which could examine his condition at a genetic level and identify possible drugs that may help him, including medications the NHS cannot offer.
But it will cost £14,000.
Mel said: “The foundation believes they are getting closer to treatments for this condition, but they need time and funding. They estimate around two years before treatment plans will be available. We do not know if Oli has that long to wait. This personalised analysis and drug repurposing plan is his only realistic chance, and the only barrier is cost.
“Once we raise the £14,000 needed, Oli can begin receiving support that could significantly improve his quality of life, support that is not available to him anywhere else. Our goal is to raise the funds for this life changing investigation for Oli and to support future research through the DNM1L Foundation so that other families affected now and in the future can receive help.
“The condition has no cure. Because this genetic variant is completely unique, no one knows what symptoms may develop or how his condition will progress. Doctors can only try treat and soothe each symptom as it appears.”
The last four months have, said Mel, been ‘overwhelming’ for her and her family, on whom she said it has ‘taken a toll’. She added: “This fund-raising is literally to save his life. It’s the only hope I have to save his life.”
It is not the first heartbreak to hit Mel’s family. In May 2019 her nephew Cayden Tickner, died at the age of 11 from a very rare brain tumour.
To donate to the fund-raiser go to https://www.gofundme.com/f/olijay-needs-your-help
