Surgery saved our lives, now I want to help others
The stress of discovering his son had a brain tumour almost killed Brad Jones. Now he’s hoping to support other parents dealing with the trauma of having a sick child, he tells
When Brad Jones learned his youngest child, Julius, had a rare brain tumour in April last year, his world fell apart. But yet more trauma was to come when, just six months later, Brad, 36, found himself lying on an operating table after a throat infection he’d ignored led to sepsis, with doctors warning him he had just two hours to live.
Today, as he recounts his family’s double brush with death, Brad admits he dealt with the situation very badly. Despite being in a loving relationship with Clare, 42, his wife of 10 years, and being supported by friends and family, he says he has never felt so alone.
“Suddenly I felt I had no answers,” he admits. “Normally I am in control of everything but for the first time I didn’t know what to do. I felt hopeless. I was very stressed and I wasn’t good at dealing with it all.”
Rather than admit he needed help, he buried his head in work.
Brad – who lives in Essex with Clare, their two children, Octavia, nine, and Julius, five, plus his stepdaughter, Isabella, 18 – says the family first started to notice something wasn’t quite right with Julius in April 2022.
“He had been saying he had a ‘hot brain’,” recalls Brad. “Now we realise he was telling us there was something wrong. But back then we didn’t know what he meant. He seemed unable to regulate his emotions too.”
It wasn’t until later that month, while the family were staying in a holiday park, that they realised something was very wrong.
While enjoying a family swim, Julius suddenly started to have a fit.
“I went into pure panic mode,” says Brad, a CEO for marketing agency Sure Services.
“Thankfully I was holding him above the water at the time. I thought it was a stroke at the time. It lasted about three minutes, but it felt like it went on for much longer.”
Worried Brad and Clare rushed Julius to nearby Colchester Hospital, where an epileptic seizure was confirmed. Julius was sent home to rest, but just two days later another seizure hit and before long Julius was having several a day.
Put on epilepsy medication to steady the seizures, an MRI scan carried out in May 2022 confirmed their worst fears – he had a rare Glioneuronal tumour that was 1.87cm in length and lodged in the middle of his brain. The couple were told this type of tumour causes complex epilepsy, high levels of seizure activity and is also highly associated with autism. They were also warned it does not respond to chemotherapy or radiotherapy and the only option was surgery. “Clare was very proactive and started doing some research, but I didn’t deal with it well,” says Brad. “His scans were sent to Great Ormond Street but we were warned it was not run of the mill surgery and there was a chance he wouldn’t be able to even have that.”
Thankfully, after an agonising wait, the couple were given the good news in November 2022 that Julius could have surgery, but with waiting lists high, his operation was scheduled for the following May, a whole year after his first seizure.
Brad tried to cope by working longer hours, thinking if he did, at least he was financially supporting his family. However, the stress took its toll and Brad’s own health started to deteriorate as Christmas approached.
“I got it into my head that I needed to work hard for Julius,” he admits. “But I ignored my own symptoms. I felt very tired, I was in pain and then I got an infection in my throat.
“Eventually I couldn’t eat any solids. I was so determined to finish everything I was doing that I carried on. But then, when my swallowing was so badly affected, some soup I was eating started coming out of my nose instead of going down my throat, I knew I needed to get checked out.” To his horror,
‘‘ Julius had a 1.87cm tumour lodged in the middle of his brain
Brad was told by alarmed doctors the infection, called Ludwig’s Angina, had reached his soft tissues, causing strangulation to his neck and sepsis.
“They told me if I hadn’t come in, I would have had just two hours to live. I needed immediate surgery to remove the infection,” he says. “All I could think was, ‘What have I done? I’ve failed my family’.”
Further breathing difficulties saw Brad put on a ventilator after the surgeons had finished and placed in a coma for two days. He was kept in over Christmas before he could go home, as the family waited for Julius to finally have his tumour removed.
Delayed by a further two months because of long waiting lists, Julius – who was still getting seizures but was stable thanks to medication – successfully underwent a seven-hour operation at Great Ormond Street Hospital in July.
“The staff were fantastic, and they removed all the tumour,” says Brad, smiling. “Julius was amazing. He bounced back immediately and came home four days later.
“He has continued since then to receive medication that will gradually be reduced and so far, he hasn’t presented with a full seizure.
“We feel so lucky, the NHS has given him a second chance at life and me one too.”
Now as Julius continues to bounce back, Brad and his wife have set up a charity in their son’s name with the ambitious goal of raising £100million in its first five years. They want to help NHS Services and other families facing similar terrifying journeys. “I couldn’t have got through this without Clare, who has been my absolute rock,” explains Brad.
“But what I have realised is that more wraparound care for families is needed. It’s tough – we found it especially hard with our daughter
Octavia. We kept telling her, ‘We need to sort Julius first’ because we were so blinded by the journey we were on with him. “Now we want to raise money to organise more care for families by helping to fund support staff like psychologists and therapists to help families through diagnosis and treatment.” He goes on to explain the core fundraising arm for The Julius Jones Trust will be Win Amazing, a not-for-profit prize draw, that will be offering incredible prizes, including cash, holidays and a family home, to generate the funds Brad hopes to raise. “When you have been through something like this, it makes you realise what the purpose of life is,” he adds. “We want to help other families.”
‘‘ The doctors told me if I hadn’t come in I’d have had just two hours to live
With AMY PACKER