11 Aug 2025

Angela and Terry are proud of their grandchild Daniel

Daniel with his mum, nan and grandad.

A leukaemia diagnosis in a child has a huge and lasting impact on the lives of the whole family. Here Angela Hughes remembers her tiny grandson Daniel’s shock diagnosis, how the family pulled together to help him through it, and the pride she now feels in him over 30 years later.

“Daniel and his mum, my daughter Marnie, lived near me and I spent lots of time with him,” said Angela, 80, who lives in Cheslyn Hay in Staffordshire. “The poor boy had had meningitis when he was just one and the experience made Marnie feel she needed to be closer to home than where they were in Portsmouth. He was such a cheerful little chap, loved his toy cars, and we used to play board games like Ludo together and read books. I’ve still got all his little drawings from when he was a child. We are very close.

Daniel with his mum Marnie.

“I remember just months after him moving back he developed a lumpy rash over his torso and scalp. His liver and spleen became enlarged and his joints were painful. He kept lying on the tiled floor and saying he wanted to cool down. We got a GP appointment and he sent us to the County Hospital in Stafford. The doctors didn’t know what the rash was so put him in isolation. We were then given the terrible news it could be leukaemia, and he was transferred to Birmingham Children’s Hospital under the care of Dr Phillip Darbyshire and his team.”

Just ten days after Daniels’ second birthday on 22nd January 1994 he was diagnosed with acute lymphoblastic leukaemia (ALL) with Philadelphia Chromosome.

“Mr Darbyshire was amazing, talking us through everything. It was terrible to hear there was only a 20% survival rate – Daniel is our miracle! We were totally shocked and afraid, and also so very anxious to do all we could to help save our little toddler.”

Treatment for Daniel began immediately with chemotherapy and radiotherapy. Meanwhile Angela decided to set about finding out as much as she could about his blood cancer.

Daniel on a research tour.

“This was before the internet, but I found out about a professor called Lorna Secker-Walker who was researching the Philadelphia Chromosome type of ALL. My husband Terry said ‘You can’t write to a professor like that out of the blue!’. Well I did, and she answered! She explained everything we needed to know, and we kept in touch. We even visited her at the Royal Free Hospital in London where she worked. Her support was really important, I’m so glad I did write to her, she was wonderful. We ended up raising over £66,000 for her research work. When she retired, Professor Christine Harrison carried on the work at Newcastle University Hospital and we got to know her too.”

Chemotherapy hit little Daniel hard. But he got through several rounds of treatment with periods at home. Angela stopped her self-employed work as seamstress specialising in wedding accessories so she could travel back to and forth to see him and mum Marnie also gave up role as a carer.

Marnie said: “When Daniel was diagnosed, it was devastating for me, and obviously Daniel, but he was too young to realise, which was a blessing. My life just fell apart, and, for many years was on hold, until Daniel was in a better place, and we could see a future ahead, and live our lives again.”

Eventually doctors told them Daniel would need a bone marrow transplant to increase his chances of long-term remission.

Daniel at 9 years old.

Daniel was too small to remember much, but one act of kindness stands out: “We were in an isolation room for my transplant, and through the high window it was snowing hard. I wished I could build a snowman. The next morning, one of the nurses, Gail, brought in a plastic container of snow! She had gathered it pristine, before anyone walked on it, and she had found a little red sombrero hat, from a Mexican doll, and even cut out a scarf! She presented it to me, in the isolation room, and I was able to build my miniature snowman! As he melted, he went back into his box, in the ward’s freezer, and I built him over and over! The kindness of Gail to think of that, stays with me, when so much else has gone.”

“Daniel’s first bone marrow transplant was in September 1994,” said Angela. “Sadly, this failed and his leukaemia came back but he underwent a second transplant in December 1996 which was a success. We owe so much to the staff at Birmingham Children’s Hospital and the Queen Elizabeth Hospital, and to our MacMillan nurse Jackie who became like family. All we know is the first donor was a young girl from London and the second came from Germany. At that time it was completely anonymous.”

After his transplant little Daniel came home and slowly began to rebuild his strength and life. But there were many challenges ahead.

Daniel in the hospital at aged 5.

“It took him a long time to come through it. By the time he was ready to start nursery when he was four he still wasn’t ready for it as he was so weak. I would push him down in his pushchair for the odd lesson. They would send teachers to the house to help him with his reading and maths, and his little classmates would send him cards. He was tube-fed for a long time. But he did manage to start full-time secondary school when he was 11. Then there was a period when he was quite ill with his liver. He took all his GCSE exams at my house under supervision of the teachers. We were told his treatment might affect his brain but it didn’t – he passed all his exams with flying colours.

“Now his liver and kidneys are affected and in slow failure so at some point he may need a transplant or kidney dialysis. They did warn us about this when they started treatment – I remember Marnie bursting into tears when she had to sign the form and saw the possible outcomes. But we will all cross that bridge together when we come to it.”

Daniel aged 29

Not only did Daniel do well in his school exams but he went on to Walsall College and the University of Stafford to study IT and maths. The 33-year-old now works full time for the Co-Op in the company’s IT department. Most of this is home-working but he visits the office once a week and has a network of colleagues and friends and a lively social life. He enjoys watching motorbike racing and the Grand Prix with his Grandpa Terry, and still spends plenty of time with Angela.

Daniel said: “My message is never give up! I am limited in my physical capabilities when it comes to high intensity activities such as sports due to my related medical conditions from my treatments and I do not feel confident about going abroad as I have got older. However, I am always trying new things and have found other hobbies and interests that I am able to do without any issues. I don’t dwell on the future to come. I live in the moment and the future will be what will be will be.”

Grandpa Terry added: “It was such an upsetting experience and it changed our lifestyle dramatically, as life suddenly became centred around the Children’s Hospital. For the years after, life was never the same. It became a series of rollercoaster rides. It also brought home to us all just how fragile life can be. We are all incredibly proud of Daniel.”

“He remains, as always, strong, positive, cheerful, enjoys his work in computers, and is an incredible inspiration and support to so many, fighting cancer,” said Angela. “After Daniel came home we used to buy toys to deliver to children in hospital and he would come with me, always grateful for having him with us. He refuses to worry about his future, as in doing that he says he would be wasting his present!

“Getting to know the two Professors helped me understand the incredible research work that’s being done into leukaemia and how new treatments will help more children survive with less side effects. Leukaemia UK is carrying on this amazing work and I look forward to a day when fewer families have to go through what Daniel and all of us did.”