At just two years old, George achieved a world-first – but not one his family would ever have wanted him to have.
George first started showing signs of being unwell in June 2023. His parents repeatedly took him to hospital and were eventually told he had an obstruction in his liver and bile duct.
A biopsy at King’s College Hospital confirmed it was rhabdomyosarcoma – a type of soft tissue cancer in his liver and bile duct.
George’s parents, Jonathan and Rachael, will never forget the day doctors told them their son had cancer. “I will never forget that moment,” said Jonathan. “It felt like my entire world had collapsed.”
Within hours, George was moved to Great Ormond Street Hospital where he began chemotherapy treatment.
The search for treatment
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But that was just the start of a year-long quest to get George the best possible treatment and make him well again.
After three rounds of chemo, a scan revealed worrying results – there appeared to be no shrinkage of the tumour.
The situation became even more complex when the family got the results of a genome sequencing test which showed George had two very rare genetic conditions – Silver Russell Syndrome and Mosaic Variegated Aneuploidy (MVA) syndrome. The latter meant George had a predisposition to cancer.
While George continued his chemotherapy treatment, his parents sought more advice from experts in paediatric liver and bile duct rhabdomyosarcoma patients, at home and abroad. It emerged that the treatment that would give George a better chance of a full recovery was the addition of a new technology called nanoknife.
A world first
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George was referred back to King’s College Hospital. King’s didn’t have a licence to use the nanoknife but sought and got a licence, and were able to successfully perform the operation on the NHS.
The nanoknife, which uses electrical current to destroy areas of cancer, allows surgeons to get a better margin of clearance around a tumour, offering the best chance that all the cancer is removed.
George was the youngest person in the world to have the nanoknife procedure and the first child in the UK to receive nanoknife treatment to his liver.
“The surgeons managed to remove all the tumour and had clear margins all the way around the removed section of his liver. This was the news we’d been hoping and praying for,” said Jonathan.
Jonathan, who works for a company which specialises in increasing access to medicines for patients with rare diseases, said: “From the day George was diagnosed, all we did was push and push to get him the treatment he needed.
“We loved that the nanoknife was something new and ground-breaking and we felt we had some input into making it happen,” said Jonathan.
Now, after a gruelling 18 months, George is cancer-free and has started nursery school.
Team George
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While George underwent treatment, Jonathan and Rachael threw themselves into raising funds to try to help other children like him. Over the course of a year, they raised £100k.
“We set up ‘Team George’ – a group of friends and family who helped us through the difficult days that were ahead,” said Jonathan.
Team George ran Park Runs, 10ks, marathons, half marathons, played rugby, rowed the Atlantic, played golf and sky-dived to raise funds for further research.
As well as family and friends, George has had support from celebrities including chef Gordon Ramsay and Rev Kate Bottley on her BBC Radio 2 show.
Jonathan is now speaking to experts in MVA and has set up a registered charity called [The MVA Society](https://www.mvasociety.org/).
The charity has three aims – to act as a patient advocacy and information site for MVA patients and their families, to form a community if practice for MVA patients and consolidate data, and to find research opportunities to make a difference to MVA patients.
The Star awards
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George, now three, rang the bell to mark the end of his treatment this summer.
“Thankfully, in himself, George is now pretty good. He’s full of beans and started nursery in September,” said Jonathan.
For the courage he showed throughout his treatment, George has received a Cancer Research UK for Children & Young People ‘Star Award’, in partnership with TK Maxx.