Sam Blackshaw

Sam was one of the kindest souls, a devoted husband, father and son who lived for his family and the countryside.

In 2021, aged just 28, Sam tragically lost his life to NORSE (New Onset Refractory Status Epilepticus) after spending 130 days in a coma. During this time, his family were unable to be by his side due to Covid restrictions.

Sam leaves behind his wife Natalie and our three beautiful children, Alfie, Ava and Arlo. His love, strength and kindness will never be forgotten.

Long Story:

Written by Natalie Blackshaw, Sam’s wife.

Sam was one of the most kind-hearted people you could ever meet. He would do anything for anyone, and his family meant the world to him.

Tragically, Sam died from NORSE on the 19th March 2021, aged just 28. He was a much-loved son, husband, daddy, brother, and friend, his loss is felt deeply by all who knew him.

Sam worked as a gamekeeper on a Northamptonshire estate, a role that perfectly reflected his love for nature and the countryside. We first met, in 2014, and together we built a beautiful life together. We welcomed two children, Alfie in 2016 and Ava in 2018, and family was Sam’s greatest achievement. He was an incredible hands-on father who loved teaching his children about wildlife and the outdoors.

In the summer of 2020, our family were excited to learn that our third child was on the way. Sadly, this exciting time was about to take a devastating turn.

On the Thursday 28th of October 2020, Sam began suffering from severe headaches,  flu-like symptoms, and a high temperature. Paracetamol did not relieve his symptoms, and he had no appetite. These symptoms continued for several days.  On the Sunday, he took a Covid test, which was negative.

By Monday, Sam said he was feeling much better and was able to eat that day. However, the following morning, on the 3rd November, he became confused and agitated.  We contacted our GP, who advised that it was likely a virus and told us to take him to A&E. His mum drove him to Peterborough City Hospital.

On arrival, they asked for his name, address and other details, but he struggled to recall his postcode. We waited for around an hour before being taken into triage. When asked for his details again, he could only remember his name.

The nurse then took us through to resuscitation, explaining that we would be seen more quickly there. By this time it was 12:40pm. They started him immediately on IV antibiotics, took blood samples, and sent him for X-rays. Initially, they suspected a urine infection, as this can cause confusion, but this and all the other tests came back clear. We could not understand what was happening, but this was only the beginning of the nightmare.

By 3pm, Sam’s condition deteriorated rapidly. He became increasingly agitated and was trying to get out of the ward. He no longer recognised his mum, could not speak properly, and did not recognise his surroundings. At this point, he was sedated.

At 7pm, he was taken to theatre for a lumbar puncture, and his mum had to leave him due to the Covid restrictions in place at the time. The results of the lumbar puncture showed that he had meningococcal encephalitis, with swelling of the brain and spinal cord.

None of his family would ever see him conscious again. Sam was sedated to give his brain the chance to rest and fight the infection, but then the seizures began — relentless and unstoppable. 

Doctors made the decision to place Sam into an induced coma. Ten days after first arriving at Peterborough Hospital, he was transferred to Addenbrookes Neuro Critical Care Unit, where the fight for answers continued.

Over the following weeks, Sam endured countless tests as doctors searched desperately for the cause of the seizures. He had MRIs, muscle biopsies, plasma exchange treatment, a full-body PET scan, and a brain angiogram — yet still there were no answers. His seizures could not be controlled, even with powerful anti-epileptic drugs, and he was placed deeper and deeper into a coma.

During all of this, Sam developed pneumonia several times, further weakening his already fragile body. Eventually, a consultant told us that Sam’s immune system had begun attacking itself.

The isolation made everything even harder. I was unable to visit because because I was over 20 weeks pregnant, and Sam’s mum was only allowed one hour with him each day. On 21st December, even that was taken away when another lockdown came into force.

At a time when Sam needed his family the most, we were left watching helplessly from a distance.

Despite doctors trying numerous treatments to control the seizures, nothing worked. We were eventually told that Sam had NORSE syndrome — New Onset Refractory Status Epilepticus. Even more devastating was the fact that Sam had progressed to super-refractory status epilepticus. Despite trying every epilepsy drug, in every possible combination, the seizures could not be stopped.

By this point, we had not been allowed into the hospital to see him for 76 days. The waiting, the not knowing, and the helplessness were torture.

On 23rd February, I gave birth to our third child, Arlo.

We were finally allowed to visit Sam on 7th March 2021, and from that day on, we visited him every day. Seeing him at last, after so many weeks apart, was both a comfort and a heartbreak in itself.

On 15th March, the doctors told us that there was nothing more they could do for Sam. His

organs were failing, and we were faced with the most devastating decision imaginable — to turn off his life support. We were all heartbroken.

Sam passed away on the 19th March 2021. He had spent 130 days in a coma. Sam’s parents Darren and Teresa, myself, and three-week-old baby Arlo were by his side when he died.

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Supporting Sam's Superheores Foundation

When Sam passed away, we truly felt like we were the only ones who had been through something so sudden, traumatic and rare, made even harder by the lack of support available.

As a family, we feel incredibly blessed to have connected with Rachel at Sam's Superheroes Foundation and to hear her devastating story of her little boy Sam. The similarities between our stories are heartbreaking - even down to sharing the same name.

We will do everything we can to support Sam’s Superheroes and to raise awareness of this devastating condition. Keeping Sam’s legacy alive alongside all the other children and adults who have had to endure this unimaginable trauma - is incredibly important to us.