when our son Henry had cancer, Rainbow Trust’s superhero carer helped us through the nightmare

When Rob Delaney’s two-year-old son, Henry, died of cancer, a woman named Fiona began visiting the family.

Fiona, who now calls the actor his friend, was a caregiver for Rainbow Trust, a charity that provides emotional and practical support to families with a child with a life-threatening or terminal illness.

“She came to visit once or twice a week and could really do anything,” Delaney says. “Often I have talked to Fiona and cried and told her my fears; often she stayed with Henry so I could just go for a run. Sometimes she even did the dishes so my wife could play with Henry on the kitchen floor and have fun. She made sure we had more and better time with our child.”

Rob Delaney with his Rainbow Trust family support associate at this year’s charity carol concert (Photo: Jon Buttle Smith)

Henry was diagnosed with a brain tumor and underwent surgery and further treatment. He died in 2018 just before his third birthday. He’d spent seven months at Great Ormond Street Hospital, then seven months at the local hospital, then the last seven months at home. Fiona started visiting during that time and got to know Rob, his wife, Henry and Henry’s two older brothers.

“The overall emotional health of the family was helped immensely by having someone who could help and knew what to do,” says Delaney, “because many people intrinsically don’t know how to help a family when their child is sick. Words People Say are almost always useless in a situation like this I don’t want to be ‘frozen’ because my son is dying, I want you to say ‘What a nightmare.’

“It was something else to have this person who was both trained and qualified, but also someone who knows they will be in a home where there are tears, sadness and anger, and often the death of a child. This is a person who knows they are going to do the hardest work there is on this earth. The people who want to do that and get involved with Rainbow Trust have something special, and the charity makes sure they’re all set.”

Delaney, who co-wrote and starred in Channel 4’s Bafta award-winning Catastrophe, says anyone who has had someone close to them knows that friends react in different ways. “Some people surprise you by standing up and doing a great job of being supportive, while other people you thought would do a great job just vaporize and let you down, and may not be able to to be able to handle it.

“A lot of people don’t want to be around relatives with a dying child, so to have someone like Fiona is like having a superhero relative who’s also — critically — a degree or two uninterested, in the sense that they’re not seeing their own child get sick and deteriorate and die doesn’t mean it doesn’t hurt them, it doesn’t mean they don’t cry and have hard times, but it just allows them to function at a higher level.

“We had to make complex medical decisions that we could discuss with Fiona, and sometimes we could just have a hug.”

Rob’s son Henry (Photo: Rob Delaney)

While Rainbow Trust helped Delaney and his family while Henry was ill, they were also there to provide support when he died. Fiona was still visiting the devastated family months later.

There are many important charities in the UK, but Rainbow Trust made a huge difference to the Delaney family’s everyday lives as they tried to get through the practical and emotional hell of their experience. “Our son died of cancer,” he says. “I can’t change the course of biology or cancer, and that’s not my job, but Rainbow Trust can love and help a child and their family, and then, even after they’re dead, Rainbow Trust is still there. So you really see how far a pound goes with Rainbow Trust.

“This isn’t to say you don’t donate to charities that research cancer, I don’t think so at all, but it means I know damn well what an hour of Fiona’s time is worth to our family, and I know that even a small donation will make a substantial difference in the life of another family.”

Delaney says it’s very likely at some point that brain tumors won’t be the number one cancer killer of kids as they are now, but he’s all too aware that something else will be – that kids will stay sick become and die – and he wants families to have someone like Fiona if that happens to them.

Fiona with Henry (Photo: Rob Delaney)

“Medicines are great,” he says, “but we’re not gods. So Rainbow Trust struggles with incredibly painful truths that the average person doesn’t want to think about. I try my best to put into words how valuable it is to a family, but I think in the end it’s one of those things, like having a child; you cannot understand it until it happens.

“I love Rainbow Trust with a capital ‘L’, and I love Fiona because to us Fiona is Rainbow Trust. Any family talking about it should probably remind themselves to say ‘Rainbow Trust’ instead of ‘Susan’ or ‘Anwar’ because Rainbow Trust is those people. That’s it for me.”

Delaney says he never thought he would ever need someone like Fiona. “I knew nothing before Henry got sick, and now I know a lot. Our family feels that it is our responsibility to help other people learn those things and get help. I no longer have a higher purpose in this life.”

How to donate?

When a child is diagnosed with a life-threatening or serious illness, a family’s life is turned upside down and they often feel bewildered, confused and overwhelmed.

l launches its 2021 Christmas appeal with the aim of encouraging generous readers to raise £75,000 to provide 2,885 hours of essential practical and emotional support to families with a life-threatening or terminally ill child.

Here’s what your donation can bring:

£3 or £5 can provide arts and crafts/activities. £10 can get you a memory box. Could pay £15 for a fun day out. £26 would provide an hour of support. £60 would provide a virtual support package. £1,780 would support a family for a year.

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