Why it matters: With 489 donations already received, the family needs just £3,000 more to fund personalised medical analysis from Unravel Biosciences – the only real hope they have been given since a devastating seizure in July left Oli-Jay unable to speak, move or cry.
The big picture: Oli-Jay is the only person in the world with his exact DNM1L gene mutation, which causes mitochondrial disease leading to a diagnosis of EMPF1. Because his 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.
The £14,000 will fund a personalised analysis by Unravel Biosciences in the United States, which uses computational biology to study a patient's exact genetics and identify medications that may help, including drug repurposing options not available through the NHS.
What's happened since: Rob, a lifelong Ipswich Town supporter who gave up his job to help care for his son, has been leading multiple fundraising efforts alongside his partner Mel and their support network.
The campaign has seen significant community backing, with Mel running online raffles, including one for her spa day that raised £250. The Rovers Hall has offered a day to help fundraise, and the family is planning a fun day with support from local businesses.
Oli-Jay's auntie Paige has been doing live-stream events, streaming for 24 hours straight each day with incentives to encourage donations.
Other supporters have organised an online darts event and a bingo night.
The current situation: 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 family's living room has been transformed into a medical facility, with a hospital bed surrounded by continuous heart rate and oxygen monitors, a tube feeding system, cleaning stations and medication storage.
Rob and Mel take turns feeding Oli-Jay, giving medications, watching his monitors and comforting him during the day. At night, their friend Dannie stays awake to monitor his breathing and body movements, alerting Mel if anything changes.
Beyond one family: Any funds raised beyond the £14,000 target 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.
The DNM1L Foundation believes they are getting closer to treatments for DNM1L conditions, but estimates it will be around two years before treatment plans are available. Nobody knows if Oli-Jay has that long to wait.
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.
What they're saying: "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: With just £3,000 left to raise, Oli-Jay's family is asking the community to stand behind them and help push the campaign over the line to unlock potentially life-saving treatment for their little boy.
