A mother who lost her 12-year-old boy to leukaemia diagnosis has undertaken 12 physical challenges in 12 months to raise money to “help save the lives of other children”. Amy Dixon, 46, a solicitor with the Crown Prosecution Service from Hartlepool, said she was certain her eight-year-son Sam would pull through after his diagnosis on November 8, 2015.
The day after his diagnosis, he started the first of three rounds of chemotherapy and then received a bone marrow transplant on February 12, 2016, but his body gradually “rejected” the transplant, causing him to become “extremely poorly” and his lungs to start failing.
Sam ended up being isolated at home or in hospital and could not go to school – and he developed graft versus host disease (GvHD), where white blood cells attack the patient’s body.
“It was cruel for a little boy but he never once felt sorry for himself,” Amy said.
Amy and her husband Paul, 52, a solicitor, said they “gave him the best life they possibly could”, taking him to the cinema, theatre and comic book shops – some of his favourite pastimes.
But, despite doctors trying everything, her “outdoorsy, active and intelligent” son passed away at the age of 12. Even though Sam did not survive, Amy said the transplant gave him a chance of survival and “those four extra years” – and this inspired her to raise money for the charity Anthony Nolan, which identified Sam’s donor, by undertaking 12 physical challenges in 12 months in 2022.
Amy raised a total of £18,900 and won the Individual Fundraiser of the Year award at the Anthony Nolan Supporter Awards (ANSAs) in June 2023 – but she does not want to stop there.
“If he hadn’t had the transplant, he would have died much sooner – it was a chance for him to survive," she said. “I am eternally grateful that he had that opportunity, and it gave us that hope for all those years as well, until the very last second.”
She added: “I will continue to try to raise more money to make sure that more children’s lives can be saved.”
Sam was born on August 1 2007 and seemed like “a perfectly healthy baby”.
However, when he was two years old, he was diagnosed with severe congenital neutropenia – a condition which increases the risk of repeated infections – and this meant he had to have daily injections of granulocyte colony-stimulating factor (G-CSF) to treat the condition.
At the age of eight, following a family holiday to America in 2015, Amy said Sam became “really poorly” – he had an upset stomach, he had lost his appetite, and he was pale and thin. He also had what she described as “pinprick” marks on his legs, which raised alarm bells.
She took him to University Hospital of North Tees and, that same day, on November 8, she was told Sam had leukaemia and they were taken to Royal Victoria Infirmary (RVI) by ambulance.
“Nothing prepares you for that. I just felt like I’d been hit by a bus,” Amy said. “We had this perfect life and then it all came crashing down.”
She continued: “It just felt like this perfect life that we had had come to an end on that day, and then every day after that was very much about living in the moment.
“Life just completely turned on its axis.”
Given Sam’s cancer was “so aggressive”, he started chemotherapy the next day and then underwent a bone marrow transplant – which replaces damaged blood cells with healthy ones – in February 2016 from an anonymous donor, whom Anthony Nolan had identified on its register.
Amy said they spent the following four years “in and out of the RVI”, he had to be isolated at home or in hospital, and he ended up developing GvHD.
“We probably spent about two of the four years in hospital,” Amy explained. “But I never ever thought he was going to die.
“All the way through, I thought, ‘There’s no way he’s going to die, he’s got all this to offer this world, he’s going to achieve some amazing things’, so I never gave up.”
Sam loved to read and was a “comic book nerd” – he even created his own superhero called Bubbleboy based on his experience of “living in a sterile environment”.
However, by November 2019, his lungs had started to fail and “he was on permanent oxygen” – and just days later, on November 22, he died at the age of 12.
“By this point, he had deteriorated so much,” Amy said. “I remember sitting with my husband and saying, ‘He’s attached to seven machines’.
“We had a hospital bed downstairs in the living room, and within 12 hours he had died, so I think he was just waiting to be at home, and then he went.”
Amy, who has two other children – Tony, 30, and Beth, 14 – said she does not remember the months after Sam’s death, as she tried to dissociate herself from it. However, she knew that she “did not want it to consume her”.
Exercise had always played an important role in her life, due to the physical and mental health benefits, and after watching the Great North Run in 2021 – a race which Amy had completed before – she wanted to undertake a new physical challenge with a friend.
Amy was inspired to raise money for Anthony Nolan and decided to complete 12 physical challenges in 12 months in 2022 – one for each month of the year.
She cycled for 100 miles on her Peloton bike over one weekend in January and climbed Helvellyn in the Lake District in October – the third highest peak in England.
She even joined British fitness coach Joe Wicks during a run in New York and trekked the Yorkshire Three Peaks for her challenge in May, which she said was “awesome”.
She later completed the National Three Peaks – the three highest mountains in Scotland, England and Wales – within 24 hours in April this year as an additional challenge.
Amy ended up raising a total of £18,900 for Anthony Nolan, which led to her winning Individual Fundraiser of the Year – an award presented to an outstanding individual who has demonstrated passion and determination to raise funds under difficult circumstances, or in a particularly inspiring or impactful way.
While Amy was “absolutely honoured” to win the award and feels “Sam will be very proud” of her achievements, she said the charity needs more support and registered donors to help continue providing life-saving transplants because “more people need the chance to survive, like Sam”.
She said: “Even though the transplant didn’t work, and he died, I don’t feel like it was a failure as it was the only opportunity he had to survive.
“It didn’t work for us, but it was the only chance of a cure.”
To find out more about Anthony Nolan, visit: www.anthonynolan.org
