Reporter Nikita Lacey would like to tell you about a special little boy who was taken too young
My cousin, Alfie Jones, had a difficult start to life. Born in St Helens on March 15, 2010 he was diagnosed with a brain tumour at just three months old and spent much of his short life in and out of hospital, dealing with the tumour and hydrocephalus, a complication from it.
Alfie found it difficult to communicate verbally. He could pronounce small words and say the letter “A”, which represented his name. Every time Alfie would undergo chemotherapy he would have to learn to walk, talk and communicate all over again.
Alfie would find new ways to communicate, such as sign language, and he would try his hardest to form a word. His parents, Craig and Rachel, would also learn sign language with him. Despite his challenges he was also a typical teenage boy, who loved to watch TV and lounge around with his two brothers.
When he wasn’t with his brothers, he was with his sidekick Lola, his Labrador. Lola and Alfie were raised together, she became like a sister to him. Lola was a very clever dog, and she understood Alfie’s needs.
Alfie found joy in simple pleasures, such as spending time with family and devouring sweets, even when he was on a diet. He was a huge Taylor Swift fanatic and particularly adored her hit Shake It Off. He also cherished Disney classics, with The Lion King among his favourites.
I will remember him for many things, especially the day he acted as best man at his parents’ wedding.
Alfie’s true best friend and soulmate was his dad Craig. They did everything together, from the simplest things like shopping to relaxing on the beach. They were two of a kind and everyone could see it.
Rachel, 37, a stay at home mum and creative, and Craig, 38, who owns his own business, have long faced the challenges of having a child with health issues, and have done countless charity fundraisers and events for Macmillan.
A few years after Alfie was diagnosed, they had two another boys, Oliver and Jude. Alfie’s younger brothers looked up to him and understood his needs. It must have been difficult for them to juggle his needs with all their other responsibilities but they did it and remain an inspiration to me.
The day that Alfie died he had been out with his family and had even won a bowling game. Later that evening when they got home, Alfie went straight to bed. The next day took him to the hospital. There were no symptoms of anything serious, and the family thought he had a cold.
But the hospital found an infection, and put Alfie into an induced coma to help his body fight it. Sadly Alfie’s immune system had been weakened by years of chemotherapy. We received the worst news. Alfie never woke up from the coma, as sepsis, a serious condition in which the body responds improperly to an infection and begins to attack the organs, had taken over his body. Alfie died on May 9 2024, aged 14.
Craig, said: “As parents we have been in and out of hospital with Alfie since he was just three months old and we can not remember a single conversation with any hospital or member of staff, regarding the dangers of sepsis and what exactly sepsis is.
“We don’t want families to go through our pain and we hope by raising more awareness about the danger of sepsis, we can help other families.”
Alfie’s story is now part of a bigger mission. My family is advocating for Martha’s Rule, which aims to improve sepsis awareness in hospitals. Martha Mills died in 2021 at King’s College Hospital in south London, after injuring her pancreas in a cycling accident. This injury led to an infection which resulted in sepsis.
Martha’s rule allows hospitals, inpatients and their families to seek an urgent review if their condition or the condition of a loved one is deteriorating. We want healthcare professionals to recognise the early signs of sepsis to save lives. The Alfie Jones Foundation is working hard to spread this message, and you can support us by following our journey on social media. Alfie may no longer be with us, but his spirit lives on through our efforts to help others and raise awareness about this silent killer.
On Saturday, March 15 we gathered to celebrate what would have been Alfie’s fifteenth birthday. We knew Alfie had health issues, but he would always fight them off, we never knew this day would come so fast. I will never forget how bravely he took on the challenges that he was met with. He will always be my hero.
Find “the Alfie Jones Foundation” on Facebook to support sepsis awareness.