Meet Arthur

In October 2022, when Arthur was four his mum Helen noticed a lump on his head. Over time Arthur developed a persistent cough, began to feel increasingly tired and more lumps appeared on his neck.

“Arthur just was not himself; we noticed changes in his mood."

In March 2023, Arthur, an avid Newcastle United fan, was diagnosed with acute lymphoblastic leukaemia and he became the first child in the world identified with a specific mutation for this form of leukaemia, a discovery that led to a difficult and uncertain treatment journey.

Specialist doctors and scientists identified the mutation through blood tests.

“It was discovered that no other mutations of this kind have been recorded elsewhere in the world, so doctors named Arthur to be the first person (including children and adults) to have this unusual mutation within the genetics of his leukaemia.”

“When you hear the diagnosis of cancer in your child your world is instantly turned upside down. Arthur has said to me ‘I don’t want to die’. As a parent hearing this was absolutely heartbreaking. Nobody should ever hear that from their child. These things stay on your mind mentally, but you just have to keep on going.”

Arthur’s treatment journey has been extremely complex and he has taken part in a medical trial but he experienced complications, including absent seizures. Standard chemotherapy proved too harsh for his body, leading to multiple hospital admissions for infections and several stays in intensive care. Doctors have said Arthur is on 'his own little trial' of treatment and medicines.

“We just have to take things day by day, hour by hour. Having your child stuck in a hospital room for a long time, who has ADHD and autism, is so hard. Arthur does not understand why he can’t leave the hospital or why people do not come and visit him.”

“I still have up and down days and wonder ‘How and why this has happened to us?’ For me this kind of diagnosis was like something you hear on TV that would never happen to your family.”

Arthur’s diagnosis has had a significant impact on their immediate and extended family and friendships. Dad Ricky, had to give up his business of over ten years. He now works as a taxi driver which is more flexible, enabling Arthur to be cared for 24/7. Helen also faced uncertainty as she was unable to return to work on a set date. She took a career break, returning to work for one day a week in January 2025. During this time the family did not get any financial help.

“Family life is full of uncertainty, stress, and fear of the unknown about the future. I am not just a mum; I am now also a nurse and a carer. We’ve been in survival mode for years. But watching your child go through this, it’s just not fair and it has a huge emotional toll.”

Since February 2024, Rainbow Trust Family Support Worker Emma has provided stability to the family and helped them cope with Arthur’s diagnosis.

“Emma has helped bring stability to a world full of uncertainty. Arthur’s diagnosis has taken its toll financially, emotionally and physically.”

Emma’s initial visits took place at the family’s home, helping Arthur feel comfortable with her, as he does not always find it easy spending time with people outside his family.

Emma and Arthur now go on days out, providing Arthur with valuable social interaction and some much-needed respite for his parents. Unlike many children his age, Arthur has not been able to attend school regularly and make friends in the usual way.

“Arthur has missed out on a lot of the important early years of making memories and building friendships. He hasn’t been able to socialise like other children, and many don’t understand why he has a nasal tube or why he has no hair.”

Emma gives Arthur routine and social interaction. Visiting soft play centres, bowling and mini golf together has greatly improved his confidence and wellbeing and Emma has also helped Helen secure funding applications, including funding for regular Saturday swimming lessons.

“Arthur’s swimming lessons have massively helped him with his physical, emotional and mental state. It is helping build him back up again."

“Emma is not about hospitals or medicine; she is all about fun. Arthur doesn’t want to leave the house a lot of the time, but he lights up when Emma comes. He never says no to going out with Emma. Every picture I receive, whether they’re at mini golf, the bowling alley or heading to the park, shows them having an absolute ball together.”

Emma also visits Arthur in hospital, spending time with him and providing support during his appointments. This enables his parents to process updates from the doctors whilst knowing Arthur is having fun. Emma provides emotional support to Helen by providing her with a safe space to talk about her worries, particularly during difficult hospital stays.

Arthur’s regular outpatient hospital appointments often involve long days spent waiting on the ward. Rainbow Trust’s North East Care team provides drop-in sessions that are accessible to all children, helping to make his hospital visits more engaging and less stressful.

Arthur continues to receive monthly immunoglobulin infusions through an IV to rebuild his immunity, enabling him to get some of his life back.

Arthur is still undergoing intense chemotherapy and there is a chance that he might need a bone marrow transplant in future if the leukaemia relapses.

When he is better, Arthur hopes to visit Disney World and Universal Studios in Florida.

“Arthur keeps saying 'Mammy when my poorly blood is all better I want to go and see the castle and go to the new Mario world'. It is the least he deserves after years of gruelling treatment, operations, blood tests, antibiotics, medicines, hospital stays, hospital trips, the list goes on and on. But most of all missing out on simply just being a 'child' and having the ability to make memories, friendships and enjoy many life experiences throughout the last few years.”

The family do not know what the future holds for Arthur, but Rainbow Trust and Emma will be there.

“If I need Emma for anything, I can just text her. She will be there to help.”

“Rainbow Trust and Emma’s support is an absolutely amazing service to have. It has been exceptional.”

There are so many families like Arthur's, that may be feeling so helplessly alone and desperate, who need this specialist support. Please donate today to help us support more families like Arthur's.

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Arthur's Story

Meet Arthur

Continued support for a family for as long as they need us