Bishop’s Stortford family’s race to raise £350,000 for life-saving treatment in USA for dad whose extremely rare form of cancer affects just two men a year in the UK

A Bishop’s Stortford family faces a race against time to raise £350,000 for life-saving treatment for a husband and father who has an extremely rare form of cancer that affects just two men a year in the UK.

Having exhausted all treatments available on the NHS, 48-year-old Jonathan Muggleton’s only option is to travel to the USA for pioneering cell replacement therapy that could stall the advance of his mucosal melanoma.

Unlike standard melanoma, the aggressive cancer forms in the mucus layer beneath the skin’s surface. There is no cure and the survival rate past five years is just 14%.

Faced with the daunting task of raising such a large sum, the Thorley Park family – including wife Rebecca and children Amelia,11, and Charlie, 9 – are throwing everything at their gofundme appeal in a desperate attempt to raise the funds. With the help of family and friends, they have generated £39,080 since launching 10 days ago.

Jonathan’s story is set to feature as part of Channel 4 documentary series Super Surgeons: A Chance at Life, charting his journey from diagnosis in September 2020 to ground-breaking surgery last September, when doctors at London’s Royal Marsden Hospital removed a tumour from his lung using robotics technology.

Jonathan, who grew up in Matching Green and attended Bishop’s Stortford College, said he was humbled by the efforts of family and friends to do everything possible to raise the money needed.

“It’s very humbling to have so many people wanting to help and make something so unattainable hopefully possible,” he said.

“I’m very lucky in that I work in the charity sector and have friends in the industry that can help to raise what seems like an unimaginable amount of money.

“The best hope for my cancer is to slow it down for a year or two. There are treatments outside the UK. One I’m looking at in the States is where they take your own cells from the tumour, regrow them and then reintroduce billions of your cells back into the body.”

Known as TILs (Tumour Infiltrating Lymphocytes), the cutting-edge cell therapy has been approved for use in the US for five years.

But with the family facing uncertainty over continuing Jonathan’s current immunotherapy treatment – the last round is due later this month, but the tumour is still rapidly growing – time is of the essence.

“Within a month I will have a scan and that will determine whether I can stay on immunotherapy to slow things down. We’re living in three-month windows, but the hope is that we’ve got a few months to fundraise and then, when the time is right, get over to the US,” he said.

It was a change in a mole that Jonathan had had in his groin since his teenage years that sparked a visit to his GP in March 2020. He was given cream to treat it and at the time felt relieved that doctors did not think it was cancerous.

But as it continued to change, a second visit resulted in him being sent straight to hospital for further tests. “It was about the size of a fingernail, but after two to three months it was still not right so I went back to my GP,” said Jonathan.

“Unfortunately it was diagnosed as a rare cancer which most doctors won’t even come across in their careers.

“I was just 44 when I was diagnosed and it hits you for six. I’ve always been fit; I run and cycle and do marathons – getting this doesn’t happen to fit people. It was very surreal, and it hits you and your world changes forever.

“You’re just plodding along working, doing the school run, paying your bills and then your world turns upside down and you just have to cope.”

Jonathan works part-time around his treatment, managing IT projects for charities for a Chelmsford-based company. As well as his love of fitness, he enjoys music and met Rebecca – the couple married last year – while DJing at a house party 20 years ago.

“Rebecca’s been brilliant,” he said. “The kids were very small when I was diagnosed so we were careful how we explained it to them, but it hit my mum and dad very hard.”

After initial surgery to remove the cancer, Jonathan had almost a year with clear test results until it was discovered again in a lymph node in his groin. He began treatment at the Marsden.

Further scans went on to reveal a lump in his lung and near his heart. He underwent a gruelling clinical trial with “truly awful” side effects, which was eventually halted as it was having no impact.

Then, in the autumn, surgeons decided to operate using robotics surgery to remove the tumour.

“Usually they would have to open up the chest and I would have been in critical care for at least 10 days, but with just some small incisions they go in and operate the equipment through ‘joysticks’ and I was back on the ward within two days of surgery,” said Jonathan.

“My surgeon, Mr Chowdray, had never done this surgery before and these people are absolute heroes. I’m in awe of their intellect and brilliance, and I’m totally indebted to him for having a go.”

The support of the hospital and its staff was one of the reasons the family decided to participate in the Channel 4 documentary. “I feel indebted to the NHS, and if I can help other people then it’s worth it,” said Jonathan.

“The crew followed us for six months, pre and post surgery, they came to our house and filmed me out cycling.

“I initially thought never in a million years would I want this, and then it becomes very public all of a sudden, but it’s almost like therapy.

“I thought, this is bigger than me, if I can help other people and give something back, that’s what it’s all about.”

Jonathan added: “I was lucky in that my cancer was found relatively early, and as long as it’s early and you get into the system there are options. I never had a cough or any symptoms or felt unwell. If you’d have said to me four years ago that you can have stage four cancer without ever experiencing a symptom, I’d never have believed you.

“There’s never going to be a cure, but this treatment in America could stall it massively. It seems to be a magic treatment which can be very successful.”