Jonah White, nine, from Gateacre, appeared to have a heavy cold but was later diagnosed with a tumour in his nasal cavity, a condition that turned his life upside down within weeks. His mother, Suzanne White, described him as "the most loving, kind-hearted little boy that you could come across."
When Jonah was four, he started feeling unwell, and it initially seemed minor. However, he was later admitted to intensive care. Suzanne, 45, told the ECHO: "He had been a bit congested in the weeks up coming up to his diagnosis. It looked like he had a bit of a heavy cold. But then, on the Saturday before he was diagnosed, a little lump appeared on his neck, which kind of gave us the red light that something wasn't as it should be."
She added: "We had phoned 111, and they said just because he'd been on antibiotics, we should take him in (to Alder Hey) and we did so on the Sunday morning."
Diagnosis and Intensive Care
Jonah was diagnosed the week afterwards, and by the following Sunday, he was in intensive care. It transpired that Jonah had a tumour in his nasal cavity, the space behind your nose, which was causing his breathing to degrade at an alarming rate.
According to the NHS, nasal and sinus cancer is a rare cancer that starts in the nasal cavity or in your sinuses. Symptoms include a blocked nose on one side of your nose that does not go away and a lump.
Suzanne said: "Because of where the tumor was, his breathing rapidly deteriorated. To keep him safe, they had to intubate him and put him in intensive care while they tackled what they could. He had an intensive course of chemotherapy. This was followed by surgery to remove the tumours from his nose, nasal cavity and his neck, all whilst living with a tracheostomy, a surgical opening made through the front of the neck into the windpipe (trachea) to insert a breathing tube."
Treatment and Recovery
Jonah then underwent six weeks of radiotherapy in Manchester, before coming back to Alder Hey to complete his treatment. This was all in the space of just two years.
The diagnosis and what Jonah had to go through was very hard to take. Suzanne said: "People say it's your worst nightmare, but it's not your worst nightmare, because you don't think that could ever happen. It's not something that's ever on your radar. Jonah's our only child, and he is everything to us. Why would you ever think your four-year-old, healthy little boy is going to be facing a life-threatening, and a life-changing diagnosis? It just devastated the whole family."
Despite all this, Jonah is now a "thriving, healthy nine-year-old now and doing remarkably well in every aspect of his life." Suzanne said: "Jonah's three years post-chemotherapy now. He still goes for scans at Alder Hey regularly. He's still under all of the consultants both at Liverpool and Manchester, but he's thriving. All of his scans are clear and that's the path that we're on. He's living a very normal life, thankfully."
Charity Support and Fundraising
During his treatment, Jonah and Suzanne were supported by the Owen McVeigh Foundation, an organisation established by Liverpool fan Mark McVeigh in memory of his son, 11-year-old Owen, who died in December 2015 shortly after being diagnosed with leukaemia. A special flag was created in Owen's memory, adapted by the Spion Kop 1906 group from an original pencil image drawn by the Liverpool fan's aunt, Natalie. Its poignant silhouetted image of a dad and son, hand in hand, carried the simple message of "It’s off to the match we go."
Suzanne said: "I'm a Liverpool fan and the flag is so iconic at the match, but I didn't really know anything more about them. It was 18 months into Jonah's treatment. I contacted Mark McVeigh at the foundation and said, ‘I've got a little boy and he's going through this terrible time.’ He messaged me back, and that's where our relationship began."
Mark was able to offer tickets for a show at the M&S Bank Arena and a holiday at a cabin in the Lake District. He also helped arrange for Jonah to be a mascot at a Liverpool match and visit the AXA Training Centre in Kirkby to meet the players. Suzanne said: "It’s just a lovely supportive family that has helped us and certainly Jonah throughout his treatment and beyond."
Jonah was named an ambassador of the charity earlier this year. Last week, he ran through an extreme obstacle course from Tough Mudder, raising over £4,700 for it in the process. Suzanne said: "Jonah, I think, encompasses everything that the foundation would want. He goes to events and he welcomes younger children. He's kind and caring and always thinking about what those children are going through, now that he's got a little bit more understanding of what he's been through."
She added: "We did the Tough Mudder last Saturday and again, he just put his heart and soul into that. He really wanted to do it, and we entered him into the older category. The fundraising started way back earlier this year when he gave up crisps for Lent. I said, ‘if you're going to do that, I'll give you £100.’ And not a crisp passed his lips for the whole Lent. When something crosses his mind he fulfills it, and he's just plugged away at it ever since."
Suzanne is delighted with what Jonah is doing and pledged to continue supporting the Owen McVeigh Foundation. Suzanne said: "They've done so, so much for Jonah. We as a family, and also the community, are very proud of him and everything he's achieved, not just tackling his illness and his diagnosis, and all of the challenges that have come with that, but how he's approached his fundraising and his challenge, and smashing the Tough Mudder, which he absolutely did. We’re so proud of him." Donations to Jonah’s fundraiser are still open.
