Joe Gawthrop

Joe was the most beautiful soul, funny, kind, loyal, and intelligent. He was the center of our world, and many people's favourite person. They say it's always the good ones, but with Joe, that felt less like a saying and more like a simple truth.

Before 6th December 2024, Joe was a healthy 29 year old, who had run the Manchester Marathon that year and was living a full and happy life. He worked hard in a job where everyone loved him, was lovingly doing up his home with his partner, he cherished his family, including his dog Betsy.

On Saturday 6th December, Joe began to feel unwell at a music concert, as if a flu or virus was coming on, he felt an ache in his back. Joe was never one to suffer in silence, so a little grumpiness wasn't out of character, and nobody was alarmed. The next morning he seemed more like himself, heading out for breakfast and a mooch around the shops.

By Sunday night, the fever and chills started. Joe took the following days off work to recover, assuming it was the flu. His symptoms fluctuated, by Tuesday evening he felt well enough to walk around the local village and was planning to return to work the next day.

On Wednesday Joe felt rough again, and due to the lack of respiratory symptoms he took a covid test, it came back negative, he felt achy, had a bad head, but was mostly settled on the sofa rather than confined to bed.

On Thursday he rang his mum feeling poorly, looking for a bit of TLC, but there was nothing to suggest cause for alarm.

Joe spent the day watching television, dozing, and watched a film with his girlfriend before heading to bed around 9:30pm. He was sick once before sleeping.

On the morning of Friday 13th December, Joe didn't wake to his alarm. As his girlfriend got up to start her day, she heard a noise, and found Joe having a seizure. Help arrived within ten minutes. Joe was admitted to Wythenshawe General Hospital that day, continuing to have seizures on arrival.

A desperately anxious day passed as we waited and hoped for Joe to wake up. When he didn't come round, he was moved to the ICU on the evening of the 13th, and placed in an induced coma. Initial suspicions pointed to encephalitis — first viral, then autoimmune. We waited days for various results to come back, all of which came back negative.

On the 4th day Joe was due to be transferred to a specialist neurological intensive care unit in Salford, but just before transfer he aspirated, an intensive care emergency, it was touch and go for 12 hours but he pulled through.

The medical team spoke of treating refractory seizures, but no specific diagnosis, no mention of NORSE or FIRES, was ever given. Everyone understood it was serious. No one could imagine what was coming.

On the sixth day Joe was transferred to Salford neurological Intensive Care, where we were told to prepare for a long stay, that we might become "part of the furniture" in the unit ! This was encouraging, so as a family we set about planning how we could visit and work, for as long as it took.

On the afternoon of the 23rd December, some change was noted with Joe and the words “cautiously optimistic" were used, but this was short lived.

The next day when we arrived at the unit, our worlds fell apart. Joe had deteriorated. He was in multiorgan failure, despite every effort, he died on Christmas Eve, 11 days after his first seizure.

As a family we could not understand how something could take “our Joe” , a healthy, strong young man, in a matter of days.

It was five months later, where at a meeting with the consultants, the result of his post mortem along with a hospital investigation revealed Joe had more than likely died of Cryptogenic Norse. It was after this meeting that we learnt of the NORSE Institute in America, meeting Nora and Rachel from Sam's Superheroes, who offered some answers and lots of support.

He was, and still is, the center of our worlds.

We share Joe's story for every family suddenly confronted with something so rare, so fast-moving, and so devastating. To show how symptoms that feel so ordinary, a flu, a fever, a few days on the sofa — can, without warning, become something catastrophic.

We hope that any other family who finds themselves sadly in this situation, might not feel quite as alone as we did in those unbearable days in hospital, and the months that followed his death.

Thank you - Joe’s family.