Healthy man, 25, left brain damaged after headache turned out to be ‘one in a million’ condition which almost killed him

A once healthy young man has been left permanently brain damaged after a headache turned out to be a “one in a million” condition which almost killed him.

Martin Griffiths, a 25-year-old from Boston, Lincolnshire, was “absolutely healthy” and “full of energy” when everything changed one day while at work for a drainage company.

Martin worked alongside his father, 47-year-old Jason, who said his son felt like he had been “hit round the back of the head” and he was quickly rushed to hospital.

Initially diagnosed with a stroke, Martin was then told he had a brain tumour and was given just three to six months to live.

After undergoing a procedure to eradicate the inflammation in his brain, Martin was placed in an induced coma and his condition deteriorated to the point his whole family, including his mother, Lyndsey Cheshire, 44, and his siblings, Aaron, 23, Chelsey, 19, and Nathan, 13, gathered at his bedside after deciding to switch off his life support.

To doctors’ and his family’s shock, Martin woke up a day later – and though he was in a vegetative state, he was able to engage with his eyes, wink and even move his lips to kiss his girlfriend, Jess Turner, 27.

“This was very rapid, whatever was going on in Martin’s head took hold and it was almost like his brain was on fire,” Jason told PA Real Life.

“What he has is incredibly rare, we were told the few cases there have been are generally in older people and they’re immediately put on to palliative care.”

Martin was an “outgoing” man who was “full of energy”, according to Jason, when he started to experience headaches one day at work as a drainage engineer on February 14 2023.

Martin was taken to the Pilgrim Hospital in Boston where a scan on his brain found a “pooling of blood” in the back of his head and he was placed on the stroke ward.

He soon started to feel “tired” and was “struggling to remember certain things”, Jason said, and he was referred to Queen’s Medical Centre in Nottingham for further tests.

He was admitted to the Queen’s Medical Centre in June 2023 and placed on the oncology ward, where he was diagnosed with an infiltrated brain tumour.

Martin underwent a biopsy, where they cut his skull open and took away a piece of his brain for further testing.

While awaiting the results, Jason said the family were informed he would have three to six months to live.

He added Martin wanted his family to “stop crying” and go on holidays and trips instead – but his condition worsened.

“It got to a point, over a week to 10 days, where it was like talking to a baby again,” Jason said.

The biopsy results were then returned – but no cancer was found.

In July 2023, doctors proposed the leading theory that Martin could have Primary Angiitis of the Central Nervous System (PACNS) – a type of CNS Vasculitis, or inflammation of blood vessels in the brain.

“It’s incredibly rare, particularly at Martin’s age,” Jason said.

He then underwent a plasma exchange to eradicate the inflammation in his brain, a procedure which replaces the plasma within the blood, although this had a “devastating” effect and he ended up in an induced coma on July 14 2023.

As Martin’s condition deteriorated, it was thought he would not come round and the family made the decision to switch off his life support.

“All of Martin’s friends and family came to the ICU, there was about 21 of us,” Jason said.

Martin continued to breathe on his own however, which astounded his loved ones and the medical staff – especially when he woke up the next day on August 15 2023.

“He fought so hard and he just didn’t go,” Jason said.

Martin was initially in a vegetative state but over the next few weeks he was able to engage with his eyes, wink and move his lips to kiss his girlfriend, Jess.

His brain is severely damaged but Jason hopes he will continue to make improvements.

“He’s not with us fully but Martin has done so many things he should’t have done, he’s gone against the grain with almost everything throughout this entire process,” he said.

Jason purchased a house in April 2024 where he is hoping to bring Martin home – but a few modifications need to be made first in order to make it accessible.

The family launched a GoFundMe page to help them with these costs, raising over £2,000 so far.

Dr Manjeet Shehmar, medical director of Nottingham University Hospitals NHS Trust, said: “We recognise the huge impact that this has had and continues to have on Martin and his family.

“CNS Vasculitis is an extremely rare condition, affecting fewer than one person in a million, and usually affects older patients.

“Because of the rarity of the condition, it is very challenging to diagnose as it presents with very variable symptoms.

“It is usually diagnosed through brain biopsies; these are shared with consultants across the country for review and consideration in order to make a diagnosis.”

To find out more, visit the GoFundMe page for Martin here: gofundme.com/f/rarer-cns-vasculitis-pacns