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<div>Hi, I’m Oli’s mum. Please read this to the end ❤️ we really need your help.
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<div>Little Oli Jay is 2 years old. He was a normalish toddler growing up, just behind on his milestones and struggling to swallow properly. But he was trying his best every day. We had just celebrated his 2nd birthday in July 2025. He had started belly laughing, shouting mama which was his one and only word, sitting up on his own and even standing with a little help from me or his dad. He was suspected cerebral palsy at 1 years old which shocked us, but as a family and with physio we all worked nonstop to help Oli reach his best potential. He worked so hard.
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<div>But everything changed 2 weeks after his 2nd birthday. Oli went to bed next to me because he had been acting strange, so I stayed awake. At 1.30am on the 31st of July 2025 he went into epileptic status. He struggled for around 40 minutes with just me, his cousin and his siblings trying to support him until emergency services arrived. They worked so hard to help him, but the medication didn’t stop the seizure. Oxygen helped him breathe but he had to be rushed to Addenbrooke’s Hospital and taken straight to resus for 2 hours where around 50 professionals tried to stabilise him. We watched anxiously through the window because we weren’t allowed in due to everything they needed to do. Nothing helped disconnect the seizure.
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<div>He was then taken to intensive care induced coma for 6 days while they ran every test and gave every medication possible. They quickly realised he was still seizing in intensive care. We were told they were hoping for a miracle for us to bring him home. As you can imagine I couldn’t understand what was happening. I couldn’t sleep or eat, I was shaking constantly, begging for a miracle. Nothing was working and every day was torture.
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<div>With help from Great Ormond Street, professors in Newcastle, Addenbrooke’s and advice from specialists across the country, after 6 days we still don’t know if Oli stopped seizing because his brain did it itself or because the medication finally helped, but he did stop. He was woken up and moved to HDU.
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<div>We quickly realised something was very wrong. He couldn’t communicate, he was heavily sedated, his body was shaking constantly and his mouth and eyes were twitching nonstop. He couldn’t swallow, he struggled with his secretions and needed oxygen. Doctors hoped it was withdrawal from the high amounts of medication, but Oli suffered like this for 2 weeks before they realised more was going on.
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<div>He had more EEGs and MRIs which showed slight brain damage and constant seizure and movement activity. Genetic testing was done urgently and the results came back within days. Our little boy has mitochondrial disease caused by a DNM1L gene mutation with an extra code attached that no one else in the world has. 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.
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<div>He now has dystonia and dyskinesia as well as partial brain damage. He is unable to speak, cry or move willingly. Everything is involuntary from the seizures and movements. It is torture watching him. I have searched everywhere for how to help Oli but there is no cure. He is on every anti seizure and movement disorder medication possible. His genetic condition affects energy production in the brain and is damaging his hearing, eyesight (we’ve now been told his eyes are deteriorating and he can only see bright shapes, his optic nerves are failing), and eventually it will take his respiratory function.
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<div>He is now in a hospital bed in my living room with 24 hour care. He has everything through an NG tube. Nearly every part of his body will be affected. He is now non mobile and his MRI and EEG show that his brain is having constant epileptic and movement activity that fires so much they can’t even tell one from the other.
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<div>Oli has spent 16 weeks in hospital apart from a few days here and there at home before ending up back again. Every minute he is struggling. 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. I believe he is stuck inside his own body.
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<div>After 4 long months of nothing but bad news and being told the worst and to prepare ourselves, we reached out to a foundation in America called the DNM1L Foundation. They are working around the clock to help us. They told us about a program by Unravel Biosciences which uses computational biology to study a patient’s exact genetics and find medications that may help.
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<div>But it costs £14,000 for Oli to be studied as a single patient.
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<div>The foundation who put Oli forward are also trying to find a treatment or cure, but they are still a few years away and need our help. The more funds raised, the faster children like Oli might get treatment.
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<div>I really need your help. I’ve had no hope for 4 months and this is the only thing giving me even a tiny bit of hope. It all comes down to money to try to save my little boy. I am trying to raise £14,000 for his testing, and anything raised over that will go straight to the DNM1L Foundation in America for research into a treatment or cure.
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<div>I don’t even know if this makes sense, but my heart is racing and my eyes are streaming every day. Waking up not knowing what today will bring for Oli is unbearable. This is not something I ever wanted to broadcast but I don’t know what else to do. I need your help and I will fight until my last breath to save my little boy. We don’t know how long we have. This is the reality I’m supposed to accept, but how can anyone accept that.
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<div>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.
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<div>Oli’s siblings are witnessing everything and want to run a 5k marathon. They are only young so I won’t let them do more, but they want to help raise money for their little brother.
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<div>Oli is now under EACH Milton hospice addenbrookes ,west Suffolk hospital, America and Newcastle teams of specialist 
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<div> and professor's
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<div>Thank you for taking the time to read this ❤️
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Ann Barry

Alexander Whiting

Susan Palazon

Mason Nunn

Anonymous

Polly Farrington

Stephen Garrett

Shanti Anjali

Daniel Whymark

Oli-Jay  needs your help (rare genetic  disorder ) DNM1L

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Oli-Jay needs your help (rare genetic disorder ) DNM1L

Still £13,865 to go. Help us build momentum.