Karen’s son Jake was just 25 years old when he lost his life to sepsis in January 2025.
Jake had been diagnosed with Duchenne Muscular dystrophy at the age of 5 and was a wheelchair user from the age of 10. Karen – a customer service assistant from Stevenage – describes Jake as a quiet, intelligent boy with a maturity far greater than his years.
Just seven months later, Karen has generously shared Jake’s story – in order to help raise awareness of sepsis for others. She explains what happened here.
When Jake was 5, he was diagnosed with the progressive muscle disease Duchenne Muscular Dystrophy. He started using an electric wheelchair full time at the age of 10 – in 2009.
In June 2024 he got a pressure sore on his bottom and by the July this had led to him being in bed for most of the day, only getting up in the evening for dinner and a shower. By December he was on morphine for the pain and the community nurses were coming in daily to change the dressings. Boxing Day 2024 was the last time Jake got out of bed to eat a full meal.
On the morning of Monday 13th Jan, I got up and went into Jake’s room, washed him, made him comfortable and put the tv on for him. I then sent an online form to his GP as he was due to run out of antibiotics that day. This was the second lot of antibiotics that he had needed for the infected pressure sore. His carer came in and I went upstairs to work as usual. An hour later the GP surgery called me and said that they would send someone out to the house the next day.
At about midday on that Monday Jake’s carer texted me and asked if I could come down as Jake was acting strangely. I went down to see him and the first thing he asked me was whether I could understand him. The carer then said that he had been speaking in French. My first thought was that he probably had a urine infection. I went back to work until 3.30pm and when I came down again it was as if Jake’s personality had changed in a few short hours. He was looking at me strangely and accusing me of trolling him. This, coming from my mild-mannered son, was shocking. I called 111 and they sent an ambulance out. The ambulance checked him over and said that he was asymptomatic. They asked Jake whether he wanted to go to hospital and he refused, which I was happy with, especially as he was due to have the GP visit the next day.
The next day – Tuesday 14th – two GPs came out as arranged. They tested Jake’s urine (which was clear), prescribed more antibiotics and arranged for a phlebotomist to come and do blood tests and for a community nurse to do a swab. Jake was again asked if he wanted to go to hospital, but he was clear that he wanted to stay at home. He was less confused by this stage, but his eyes were rolling, and I thought that maybe, because he wasn’t eating, the morphine was causing side-effects.
The phlebotomist then came out on Wednesday but wasn’t able to take blood. That evening a community nurse came out. They hadn’t been briefed about taking a swab but took it anyway and said that we would need to deliver it to the hospital ourselves, which we did first thing on Thursday morning, 16th January. In the end, we didn’t get the results back before Jake died.
On the Friday the community nurse came out again and tried to get blood but couldn’t, so she requested that a community paramedic come out and – finally – they managed to get a sample. The community nurse then spoke to the GP, and they put some medication in place in case Jake deteriorated over the weekend. By this stage he wasn’t eating and was only taking water and medication through a syringe.
Jake had a steady stream of visitors on Saturday 18th January, as I just had a feeling that I couldn’t shake. On Sunday morning he seemed much brighter. Very sadly, Jake died in the early hours of Monday morning, 20th January 2025.
I then received a phone call on the Monday afternoon from the medical examiner asking questions as they were concerned that a 25 year old had died at home from sepsis without the proper documentation. A doctor had attended to certify the death but didn’t say anything about the cause of death. We were not told until the phone call with the medical examiner that Jake had died from sepsis. I was shocked as sepsis had never even crossed my mind, and I was surprised that no one had diagnosed this before he died. At the time I just felt grateful that Jake had died at home peacefully.
Since he died, I have been attending an online group for bereaved parents once a week which I found after searching the internet. The group is amazing. We tell each other all the things that we can’t tell our closest family and friends about our grief. Even the facilitators are bereaved parents – I honestly don’t know where I would be without the group.
Writing this account to share Jake’s story with Sepsis Research FEAT has been hard, but also therapeutic. I wanted to do so, though, to spread awareness.
Jake was a quiet, intelligent boy with a maturity far greater than his years.
He loved creating 3D modelling designs, building computers (he gave us instructions, and we built them) and gaming on his Xbox. He was interested in current affairs, excelled at maths and was knowledgeable about a multitude of subjects. When his stepdad Steve and I were watching quizzes in the front room Jake would be shouting the answers to us from his bedroom. He also loved watching Doctor Who, Star Trek, Top Gear and Grand Designs.
He was always remarkably accepting of his condition. He never complained or questioned his diagnosis. He had great dignity, strength and courage. He hated being in bed all the time but wanted to do the best thing for his health and most of the time he tried to be positive, but it was really tough for him.
With hindsight I do feel that there were a lot of clues that were missed – both by me and by the many health professionals involved in Jake’s care. In particular I wish I had known before that one of the signs of sepsis is confusion – I would have pushed for urgent action the week before Jake died.
I want to educate people now, so this doesn’t happen to someone else’s son.
I would simply say to others: know the signs of sepsis and act quickly if you are in any doubt.
Charity comment:
Karen’s story of losing Jake, at just 25, is heartbreaking and poignant. The picture she paints is of a young man living his life as fully as he was able.
Jake had been unwell for several months, but appears to have born this bravely, as he did when he began to develop sepsis during the last week of his life.
We hope that the sense of peace that Karen has conveyed in her account of losing Jake and the fact that he was able to die at home is of some comfort to her and to his wider friends and family.
Karen says that she wishes that she had known some of the key signs of sepsis during that last week, and that the medical professionals who saw Jake had also identified the symptoms of sepsis sooner. It is clear that she and Jake’s carer were quick to identify changes in his condition, however, and to seek help for him as urgently as possible. This is something that the charity would always advise if you have any reason to think that the symptoms that you and someone else are experiencing are in any way unusual.
Karen now wants to turn her experience around, to helping others by raising awareness of sepsis alongside this charity. She has also kindly offered to provide PPIE (patient & public involvement and engagement) to future sepsis studies, to ensure that diagnosis and treatment is improved and outcomes for sepsis patients are optimised.
Just a few months on from losing Jake, we are so grateful to Karen for sharing his story and for her generous pledge of support for this charity’s work.