Gers to save our daughter

CARE COSTS: Children such as Isla, right, with mum Nicola, can benefit from crowdfunding UK. Sometimes it is due to a lack of clinical evidence to support it or because it is deemed too expensive. “When we asked the oncologists why she couldn’t have pioneering treatments like immunotherapy, they said it came down to ethics,” says Michael. “Companies are reluctant to test new cancer drugs on children because if the drugs don’t work it would be devastating. But when your daughter is as sick as Isla you’d try anything to make her better.” Because Isla’s cancer is rare – about 100 children in the UK are diagnosed with neuroblastoma every year – this also makes it harder to treat because resources for research into rare conditions are often scarce. “Some GPs here don’t ever see neuroblastoma in their lifetime,” Michael explains. “But in America where the population is so much bigger, there are around 700 cases a year and they have a better idea of how to treat it.” Stephen Richards from the charity Solving Kids’ Cancer says: “We’ve certainly noticed that there are growing numbers of parents crowdfunding on behalf of their children.

“Nice (National Institute for Health and Care Excellence) has become much stricter in approving new drugs, especially those which cater for a small number of patients and often children with cancer fall under that remit.”

He says the cost per child for new cancer drugs is often very high but points out that the calculation doesn’t take into account hidden costs such as parents having to sell their homes and possibly leave their jobs when their child is undergoing treatment.

“We want the best treatment for children with cancer to be available in the UK because that’s what’s best for them,” he says. “It’s only if all options for treatment in the UK have been explored that we would support families going for a treatment abroad. It’s a very challenging decision to take for the family, financially, socially, work-wise and it’s not a decision to be entered into lightly.”

Emlyn Samuel of Cancer Research UK says: “It’s worrying that more and more cancer patients are turning to crowdfunding to pay for their treatment. When a treatment isn’t covered by the NHS it’s generally because there’s a lack of evidence that the treatment is effective or that it offers good value.

“Clinical trials are the best way to provide that evidence and Cancer Research UK supports hundreds of trials to bring new and better options to patients.

“It’s vital the NHS adopts new treatments as quickly as possible once evidence has shown they benefit patients.”

UNTIL December last year Isla was a happy, healthy baby. But by January her parents sensed something was seriously wrong. Within a few months Isla had lost a stone and was constantly worn out.

Eventually a GP found a lump in her abdomen and scans revealed a 20cm tumour and showed the cancer had spread to her bones.

“When the doctor told us Isla’s cancer might come back our world fell apart. We knew we’d do anything to make her better so we started researching the latest treatments,” says Michael.

“Through talking to other parents whose children have cancer we found out about immunotherapy which harnesses the body’s immune system to prevent the cancer from returning.” Michael and Nicola contacted a specialist children’s hospital in New York. The hospital offered the couple a trial of an as-yet-unnamed type of immunotherapy which involves injecting a virus which can fight the cancer.

But even though they negotiated a discounted rate for the treatment it would still cost £192,000 for seven sessions of immunotherapy, including the cost of flights and accommodation. It seemed like a huge amount to raise on their own.

Michael says: “A friend suggested setting up a crowdfunding page where people could donate towards Isla’s treatment. It seemed like a long shot but we’d do anything to make Isla better.”

Now the race is on to raise the remainder of the money before July next year, when Isla finishes her treatment in the UK and can start immunotherapy abroad.

“It has been the hardest year of our lives,” says Michael. “We’re really grateful to everyone who has donated. Some are friends and family but the whole community has rallied around her and many people we don’t know have donated too. We also feel very lucky that Isla’s cancer was detected when it was. We’d move heaven and earth to get her well again.”

To contribute to Isla’s fund visit justgiving.com/crowdfunding/ IslaCaton