Muswell Hill parents crowdfund for baby’s crucial cancer treatment

The immunotherapy treatment baby Robin needs is not available in the UK, reports Miriam Balanescu

The Muswell Hill parents of a baby who needs treatment unavailable in the UK for a rare form of cancer have started a crowdfunding campaign.

Baby Robin, 18 months old, was diagnosed with a rare form of MYCN-amplified neuroblastoma after he had just turned one in January. It’s a condition only 100 children in the UK are diagnosed with each year, around 50 such as Robin being high risk.

Following eight cycles of chemotherapy, a stem cell harvest and nine-hour operation, his parents, Rachel, who works in communications for a local charity, and composer-saxophonist Nick discovered that the immunotherapy treatment Robin needs to stay cancer free is not available in the UK.

Rachel told HCP: “It was a bit of a whirlwind of a few months. Everything happened really fast. We know that the scope of the treatment here is somewhere between six to 18 months.

“It turns out he doesn’t qualify for this immunotherapy here because he’s not going to have something called high-dose therapy next because he doesn’t need it.”

Robin is in remission at the moment, but, due to the aggressive nature of his neuroblastoma – with cells dividing at a much faster rate than other cases – the cancer will return and he needs immunotherapy “to train the body to heal itself.”

Rachel adds: “Otherwise you have to have chemotherapy for the rest of your life.”

The only next treatment available in the UK, should Robin qualify, is high-dose chemotherapy with stem cell transplants – with a strong risk of causing seizures, fatal infection, and liver complications. The long-term complications could include infertility, secondary cancer, deafness, and permanent heart, lung and thyroid issues.

In the US and Barcelona, more advanced immunotherapy treatment would be available to Robin – but unfortunately, his parents currently don’t have the funds to cover it. Earlier this month, Rachel and Nick started a crowdfunding campaign to begin treatment in Barcelona.

Rachel says: “It’s definitely the best option for us.

“He doesn’t have to go for a long period of time. We just go for a few days, he gets treated, we come back.”

For the communications manager and composer, this crowdfunding campaign is crucial.

“I don’t know any other way, basically,” says Rachel. “It’s been part of our lives since January, but there were some people that didn’t know.

“We don’t really ask much of other people ever. They must have thought, this is really serious.”

“It gives us much hope every day to see it. It really helps to counter the dark side of everything. You know that people are behind you.”

Rachel adds: “Even though it’s at £38,000 which is staggering, it’s only going to afford one in five treatments. We’ve never seen that amount of money in our lives, but it’s still not enough.”

Rachel has been overwhelmed by the support of the community in Muswell Hill and Crouch End, with local friends set to put up posters in the area this week. Nick will also be performing gigs to fundraise in Hornsey.

To find out more about the crowdfund, visit: https://www.crowdfunder.co.uk/p/help-baby-robin-survive-cancer

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