Meet the fun-loving Kettering boy who needs £200,000 in battle against rare childhood cancer
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Kettering’s Sebastian Nunney is like almost every other six-year-old. He’s got wobbly teeth, loves Marmite on toast, enjoys playing with his red remote-controlled Jeep, jumping on his trampoline, going swimming and he adores cooking new recipes with his dad.
But three years ago he fell sick and he has been battling rare cancer neuroblastoma – beating the odds many times.
Now his family have shared his story in a bid to raise tens of thousands of pounds for potential treatment abroad.
An IVF baby, Sebastian was the much longed-for addition to his parents Gregg and Lindsay’s lives.
Dad Gregg, now 43, once a well-known voice on local radio across Northants, had stepped back from presenting to re-train as an English teacher. Cottingham-born Lindsay had returned to Corby, where she had gone to school, to work at award-winning Pen Green Nursery as the HR manager.
Things were looking great for the new family, but three years ago, as Covid gripped the world, Sebastian, then just four-years-old, fell sick.
His health deteriorated rapidly. Gregg and Lindsay refused to believe explanations that Sebastian may have a chest or ear infection. Despite ‘dramatic’ weight loss and being in pain it was put down to ‘behavioural’ problems.
On July 4, 2020, after a fruitless three-week search for answers, the family once again sought medical help and headed to Corby Urgent Care. A monitor revealed Sebastian’s oxygen levels were dipping dangerously. Immediately they were sent to Kettering General Hospital children’s A&E where an X-ray of the tot’s chest discovered a huge ‘mass’.
Gregg takes up the story: “They panicked and called for transport to take us to Queen’s Medical Centre in Nottingham – and that was the last time Sebastian saw Kettering until the Saturday before Christmas.”
Sebastian was admitted to the Paediatric Intensive Care Unit (PICU) at Nottingham. Medics thought it could be leukaemia but he couldn’t have an MRI scan straight away because he was ‘too poorly’.
After three days he had an MRI, a biopsy and a central line inserted to begin treatment.
Gregg and Lindsay were taken off into what they dubbed the ‘room of doom’ – to be told their bouncy home-loving boy had cancer.
Not just a small growth, but a neuroblastoma tumour was filling most of his body and pressing against his lungs so he couldn’t breathe – his face filled with fluid damaging the part of his brain that controlled his gag reflex. He was put on a ventilator.
Gregg said: “At the very beginning he was very sick. One Friday we were told by the nurses that we were allowed to be together at his bedside - even though Covid restrictions said we couldn’t - ‘to make things more manageable’, but we were told afterwards it’s because they didn’t expect him to make it through the weekend.”
They took turns on the bedside vigil where Sebastian, under heavy sedation, was started on a gruelling 80-day chemotherapy programme, a cocktail of different drugs keeping him alive.
Gregg said: “He looked like Doctor Octopus with all these tubes and wires. Nobody thought he was coming out of PICU. They took us to the room of doom again and said ‘he’s never coming out’. We were just numb at that moment.”
Sebastian needed the ventilator to apply pressure to his windpipe to keep it open – to do this the little boy had to remain on sedation. To lift Sebastian’s spirits Gregg brought a toy cookery set from home. Though dozy, Sebastian picked up the playdough pizza cutter in his frail fingers and played with it.
Gregg said: “That was it. We knew that while he remained on sedation there was no way that we could get him up and about and active and try to help him recover.”
They reluctantly decided on a tracheostomy – an opening created at the front of the neck so a tube can be inserted into the windpipe.
After the operation in September, after 66 nights they moved to the High Dependency Unit, which became Sebastian’s home for the next three-and-a-half months.
Chemotherapy left Sebastian in metastatic remission, but the chemo hadn’t touched any of the original tumour site.
A new combination of drugs from October, November and December allowed Sebastian to build up his strength – relearning to walk, talk and eat in rapid succession – a sure sign the treatment was working.
Christmas was set as the goal and a care package was needed so someone was awake with him 24-hours-a-day – despite being exhausted, Gregg and Lindsay said they would take on the shifts.
Sebastian was brought home for Christmas, as advised by their consultant, ‘to make some memories’.
But a phone call between Christmas and New Year gave them the news they had been hoping for, the chemo had ‘miraculously’ worked with the original tumour ‘all but gone’. The news brought tears of happiness after the unremitting bleak months.
Gregg admits only crying once through the process, getting ‘emotional’ when he heard the scans were clear.
2021 brought more procedures. In January, he had stem cells harvested. April 1 saw a ten-hour operation to remove what was left of the cancer and a rib ‘for good measure’.
In May he underwent ten days of high-dose chemotherapy followed by a stem cell transplant. Recovery took six weeks. Sebastian, only just five-years-old, was learning to walk yet again.
During August he had 14 sessions of radiotherapy and then, amazingly, started his reception year at Brambleside School in September with his peers.
Lindsay sat outside the classroom door every day in case Sebastian needed her to help with his tracheostomy. A trained carer shared the family home overnight – every night.
From September 2021 until March 2022 Sebastian went through a ‘relentless’ course of immunotherapy drugs – a new sort of chemotherapy designed to stop the neuroblastoma coming back. His tracheostomy removed and neck healed, the family thought they had reached the end of treatment but a meeting brought news of an ‘anomaly’ on a scan that needed ‘investigation’.
A biopsy and an MRI discovered a small swelling in his leg contained active neuroblastoma cells – once again Sebastian underwent a chemotherapy programme coinciding with the start of the school holidays.
The six cycles – a week of treatment and then two weeks off – left Sebastian tired but not unwell. The treatment was keeping the growth at bay. After discovering an ALK mutation in the tumour medics identified a DNA-matched medical trial based out of the Royal Marsden Hospital in Surrey to help Sebastian.
In January 2023 they drove the six-hour round trip to Surrey once a week for testing and a ‘wonder’ drug called Lorlatinib. Gregg admits it was a tough start to the new year. A bad chest infection meant Sebastian had to be driven to Northampton General Hospital up to four times a day for antibiotics.
At a reassessment at the end of the second month of the ‘wonder’ drug trial, scans showed the cancer had not spread but revealed a small bit of growth on the edema (swelling) in his leg.
Sebastian had to stop taking Lorlatanib and was given intensive radiotherapy – 20 sessions on his leg – to get rid of it ‘once and for all’.
Not long after his sixth birthday, Gregg and Lindsay trekked to City Hospital Nottingham for 20 mornings where Sebastian had radiotherapy under general anaesthetic.
Gregg said: “At the end of May Sebastian was still suffering – he was sore and tired – very upset and falling asleep at school, refusing to eat. It felt very much like his symptoms when he was first diagnosed. We were reassured that this was just his response to the radiotherapy, that he was just fed up after three years of treatment, and to just let him rest. “
After not taking no for an answer, new blood tests showed his white blood cell levels were low suggesting the cancer could have returned to his bone marrow.
Gregg said: “He was in so much pain he just wanted to sleep and cry all the time. An MRI scan on June 20 showed abnormal tumours in his pelvis, the base of his skull and the soft tissue around his eyes.
“At the point we got the results, we were basically told that there isn’t much hope now and we will try and find something to manage his pain. Our consultant said we’re running out of options in terms of quality of life over treatment.”
With options running out in the UK, Gregg and Lindsay have been seeking help from across the worldwide neuroblastoma community and charities who have shared their knowledge of trials and drug combinations that have been successful.
Gregg said: “We have spoken to charities like Solving Kids Cancer who have pointed us in the direction of lots of combinations of agents/drugs that he hasn’t been offered yet that have been very successful.”
On Monday, the family heard the news that Sebastian can restart the Lorlatinib treatment, the one thing that has stopped the cancer spreading – buying them time.
Gregg and Lindsay want to give Sebastian the best chance and know that their only hope is to raise the money before being accepted on a trial so they can go straight away.
Wanting to keep their lives as private as possible, the couple had previously let family members take on publicity for fundraising.
A GoFundMe page has raised just over £29,000 with help from the Corby Pen Green community, family, friends and colleagues but the family needs the money so they can take up offers of treatment abroad.
Gregg said: “We know that there is a potential programme at a hospital in Rome that, if it came to it and if Sebastian was accepted, we would need to find around £200,000 – so we need to fundraise as much as possible in advance because if we wait until we need it, we won't be able to raise enough money in time to use it.”
Meanwhile, the family is trying to make every minute of Sebastian’s life filled with ‘experiences’.
Gregg said: “We want him to have a good time now in case we don’t get that chance in the future. Throughout the whole thing he has laughed his way through it, he’s smiled even at his lowest ebb nothing has floored him.”
Lindsay agreed, saying: “He’s got a very good sense of humour. He loves helping and he’s a very cuddly boy. At the hospital they call him Mr Marmite. He has Marmite on toast whenever he has a scan. He wakes up and asks for Marmite.”
To raise his spirits, home-loving Sebastian listens to his favourite songs by Sam Cooke and The Drifters – artists that he has loved since a toddler.
Sebastian has inherited his dad’s love of cooking and the pair have launched ‘Cooking with Sebastian’ on Instagram to raise awareness of neuroblastoma and to encourage people to donate https://www.instagram.com/p/CuemY5FJikX/.
Meanwhile the family have started a bucket list for Sebastian including plane, train, and ferry rides, a visit to a theme park to go on a rollercoaster, to go to see live bands and a trip to a food market to look for his favourite olives.
Lindsay said: “No time has been given – this disease just won’t let him go but he’s beaten the odds so many times. There’s lots that he’s come through that on paper he shouldn’t have but we want to give him the best chance.
“Until you’re in a situation you don’t know what you’d do. You see parents on TV making decisions about their children – but you do anything. When you’re being presented with a situation your instinct takes over.”
The couple hope that by speaking publicly, Gregg’s former listeners and home-grown celebrities will spread the news of the fundraising campaign.
To donate to Sebastian’s GoFundMe go to Join Sebastian's Fight Against Neuroblastoma.
Donations will go directly to help and support Sebastian's care, treatment, and recovery. Any leftover funds will then be donated to a UK charity focusing on fighting this rare disease.