Two weeks before the seizure that nearly took his life, two-year-old Oli-Jay was laughing at his birthday party. He had just learned to shout "Mama" – his one and only word. He was sitting up on his own and even standing with a little help from his parents. For a toddler who had always been behind on his milestones, these were precious victories.
Then, in the early hours of 31 July, everything changed.
The night that changed everything
At half past one in the morning, Oli-Jay went into epileptic shock whilst lying next to his mum, Mel, who had stayed awake because he had been acting strangely. The seizure lasted around 40 minutes before emergency services arrived. Despite their efforts and multiple medications, nothing would stop it.
He was rushed to Addenbrooke's Hospital and taken straight to resuscitation, where around 50 professionals worked for two hours to stabilise him. Mel and her family watched anxiously through a window, unable to enter due to the intensive work being done.
"We were told they were hoping for a miracle for us to bring him home," Mel recalls. The little boy who had been belly laughing just weeks earlier was now on life support.
Oli-Jay was placed into an induced coma for six days whilst doctors ran every test and administered every medication possible. But even in intensive care, his hand twitched rhythmically from ongoing seizure activity in his brain. Nobody knew if the medications were working, or if his brain had simply given up seizing on its own.
When he was finally woken up and moved to the high dependency unit, his family quickly realised something was very wrong. He could not communicate. His body shook constantly. His mouth and eyes twitched non-stop. He could not swallow and struggled with his secretions, needing oxygen support.
At first, doctors hoped it was withdrawal from the harsh medications. Two weeks later, they realised it was something far worse.
A diagnosis unlike any other
The genetic testing results came back within days, expedited due to the severity of Oli-Jay's condition. The diagnosis was mitochondrial disease caused by a DNM1L gene mutation – but with an extra code attached that had never been seen before.
Oli-Jay is the only person in the world with this exact genetic variant.
"At the time we didn't understand what this meant, but since the diagnosis we've had to educate ourselves because no professional really knows what to do," Mel says.
The condition, which leads to a diagnosis of EMPF1, affects energy production in the brain. Because this genetic variant is completely unique, no one knows what symptoms may develop or how his condition will progress. Doctors can only try to treat and soothe each symptom as it appears.
Oli-Jay now has dystonia and dyskinesia as well as partial brain damage. He is unable to speak, cry or move willingly. Everything is involuntary, driven by constant seizures and movements. His MRI and EEG scans show that his brain is experiencing such continuous epileptic and movement activity that doctors cannot even distinguish one from the other.
"It is torture watching him," Mel says. "I believe he is stuck inside his own body."
The disease is progressive. It is already damaging Oli-Jay's hearing and eyesight – his optic nerves are failing, and he can now only see bright shapes. Eventually, it will affect his respiratory function. There is no cure.
When home becomes a hospital
Mel and Rob's living room has been transformed into a medical facility. A hospital bed dominates the space, surrounded by continuous heart rate and oxygen monitors, a tube feeding system, cleaning stations, and medication storage.
The family has had to learn an entirely new language and set of skills simply to keep Oli-Jay alive. Rob, an Ipswich Town supporter who had spent years following the Blues, gave up his job to help care for his son. Mel draws and administers emergency medications and has become expert in tube feeding and equipment sterilisation.
During the day, Mel and Rob take turns feeding Oli-Jay, giving medications, watching his monitors and comforting him. At night, their friend Dannie – who Mel considers a sister – stays awake to monitor his breathing and body movements, alerting Mel if anything changes. She goes home in the morning to rest, and the cycle repeats.
Oli-Jay's three brothers – Tommy, 11, Codi, 16, and Jordon, 18 – are witnessing everything. The younger boys want to run a 5k marathon to help raise money for their little brother.
The family cannot risk any infection, as even a minor illness can trigger seizure events and severe medical complications. In the past four months, Oli-Jay has not been home for more than two weeks without needing another hospital admission. He has spent 16 weeks in hospital apart from a few days here and there.
"Every minute he is struggling," Mel says. "I manage to get a smile now and again because I know my boy is still there. He looks into my eyes and tries to smile."
The only hope in four months
For four long months, Mel and Rob received nothing but bad news. They were told to prepare themselves for the worst. The NHS, despite the expertise of specialists from across the country – including neurologists, a mitochondrial professor from Newcastle, Great Ormond Street specialists, and teams from EACH Milton hospice, Addenbrooke's, and West Suffolk Hospital – could not provide the specialist testing and treatment that Oli-Jay needs.
Then Rob reached out to the DNM1L Foundation in the United States.
The foundation has been working around the clock to help families affected by this rare condition. They connected the family with Unravel Biosciences, which uses computational biology to study a patient's exact genetics and identify medications that may help – including drug repurposing options the NHS cannot offer.
"This is the only real hope we have been given in four months," the family says.
But there is a significant barrier: the personalised analysis costs £14,000, and it is not available through the NHS.
The foundation believes they are getting closer to treatments for DNM1L conditions, but they estimate around two years before treatment plans will be available. Nobody knows if Oli-Jay has that long to wait.
Racing against time
The family has launched an urgent fundraising campaign with a target of £14,000 for Oli-Jay's personalised medical study. Any funds raised beyond that will go directly to the DNM1L Foundation in America to support research into treatments and a cure.
"The more funds raised, the faster children like Oli might get treatment," Mel explains.
Multiple fundraising efforts are underway. Mel is running online raffles – she has already raised £250 by raffling off her spa day. The Rovers Hall has offered a day to help fundraise, and the family is planning a fun day with support from local businesses for donations, bouncy castles and entertainment.
Oli-Jay's auntie Paige is doing a live stream event from 20-24 November, streaming for 24 hours straight each day on www.twitch.tv/onerandomdolly with incentives to encourage donations. There is also an online raffle for a brand new PS5 Slim Edition.
Other supporters are organising an online darts event and a bingo night in December.
Even Haverhill Fire Service has shown support, attending the home for an oxygen safety check and bringing Oli-Jay a little Paw Patrol fire truck. They let him sit in the truck to see all the buttons and sounds – a rare moment of joy in an otherwise relentless struggle.
Beyond one family
Whilst the immediate focus is on raising funds for Oli-Jay's treatment, the implications of this research extend far beyond one family. Because Oli-Jay's genetic mutation has never been seen before, the personalised study could provide crucial insights for medical science.
As the only person in the world with this exact DNM1L variant, Oli-Jay represents both the challenge and the opportunity of rare disease research. The data gathered from his case could inform future treatment approaches, not just for DNM1L conditions but for understanding how mitochondrial diseases develop and progress.
The family is acutely aware that time is not on their side. Every day brings uncertainty about what Oli-Jay's condition might bring. But they refuse to accept that there is nothing that can be done.
"I don't even know if this makes sense, but my heart is racing and my eyes are streaming every day," Mel says. "Waking up not knowing what today will bring for Oli is unbearable. I've raised thousands for charities over the years, but now I need help. Please help me save my little boy. Every day is torture for him and I can't do this on my own anymore. I am begging for help."
The bottom line
In a world of seven billion people, Oli-Jay stands alone with a genetic mutation that no one else shares. His family's desperate fundraising effort is not just about saving one little boy – though that would be miracle enough. It is about pushing the boundaries of medical knowledge, supporting research that could one day help other families facing similarly devastating diagnoses, and proving that even the rarest of conditions deserves a fighting chance.
For Rob, a devoted Ipswich Town fan who has spent years supporting his team through thick and thin, this is the most important fight of his life. And like any true supporter, he is asking his community to stand behind him when it matters most.
