Daniel’s story

Daniel Nelson, now aged nine, was diagnosed with a brain tumour in March 2019, shortly before his sixth birthday. Daniel had been suffering with absence seizures, where he seemed to zone out and be unable to recall what he’d been doing.

After his condition worsened, his parents took him to A and E in Derby, where he was given a CT scan and his family were shocked to be told Daniel may have a brain tumour.

Mum Suzanne Nelson said: “It’s hard to describe how devastated we were. Nothing can ever prepare you for hearing those words. Our world was turned upside down but we knew we had to be strong for Daniel and his older sister, Lizzie. I just remember walking around the hospital in a complete daze, not knowing what to do or what to think.

“The next day, the MRI scan confirmed it was a brain tumour. We both just felt numb from the shock, even though knew that it was a possibility. The consultant was amazing though and explained the indications were that it was low grade and treatable and that she would refer us to the specialist centre at the QMC.

“Knowing this information was a massive help. It enabled us to try to focus on the positives of the situation. It was our worst nightmare come true but we were fortunate that Daniel’s tumour was low grade and in an accessible place for removal. Other families are not as lucky.”

Daniel was transferred to Nottingham Children’s Hospital, at the QMC, where he underwent an operation to remove the tumour in August 2019. The operation was a success, Daniel’s symptoms improved, and he was able to go back to his normal life, with regular check-ups over the following 18 months remaining all clear.

Daniel’s parents, Suzanne and James Nelson, decided to raise money for Nottingham Hospitals Charity’s Big iMRI Appeal, to thank the neurosurgery team at Nottingham Children’s Hospital who cared for their family, and to help other young patients like Daniel undergoing brain tumour surgery.

The Big iMRI Appeal raised £1.6 million for an intra-operative MRI scanner to help patients like Daniel at Nottingham Children’s Hospital. The machine, which was installed in December 2020, allows neurosurgeons to scan young brain tumour patients during surgery, to ensure they have removed as much of the tumour as possible.

It means the patient can be returned to the operating table if needed, reducing the likelihood of needing further surgery, and saving anxious waits for family members as they can be told straight away how successful the operation has been.

In November 2019, Daniel’s parents, along with friends and family, raised more than £2,400 for the Big iMRI Appeal by taking on a 12-hour fitness challenge at their regular gym.

Dad James said: “It was an event where teams of six had to complete a series of back-to-back one-hour fitness missions, which mixed cardio with strength training.

“It was really tough but nowhere near as tough as what Daniel had been through, and knowing that we had raised more than £2,400 for a worthy cause helped us to get through it. We couldn’t believe how much we raised and were blown away by people’s generosity.”

Daniel continued to be monitored at Nottingham Children’s Hospital, and during a routine check in the summer of 2021, the neurosurgery team discovered that Daniel’s tumour had begun to grow back. In an unexpected twist of fate, the iMRI machine - for which Daniel’s family had raised money - was used during his brain surgery to ensure all of his tumour was removed.

Suzanne said: “It was a really tough time for us because all the emotions and memories of everything that we had been through two years earlier came flooding back. But it was even tougher for Daniel as by this point he was eight years old and so understood much better about what was happening.

“We were really scared about putting Daniel through surgery again – and the impact it would have on him – but we knew how well he recovered the first time and that he would be in good hands. We were also relieved that the iMRI scanner was in place.”

Daniel underwent his second operation in April 2022 using the iMRI scanner – three days before his ninth birthday. The neurosurgery team were confident that all of the tumour was removed, but will continue to monitor Daniel regularly.

James said: “We never dreamed that Daniel would benefit from the scanner when we raised money for the appeal two years earlier. Whenever we walk past the MRI operating theatres we get a sense of pride knowing that we helped to fund it, and feel very lucky that Daniel got to use such a fantastic piece of equipment.”

Daniel said: “I want to say a big thank you to the doctors and nurses who have helped me through my operations and MRI scans. I am fine now and hopefully my brain tumour is gone.”