Two years ago their blissful family life was blown apart by the news their child had a rare aggressive cancer.
Ceri and Frances dropped everything to help their six-year-old son.
Hugh was “sporty, positive and strong”, a ray of sunshine who, in now-priceless home videos, could do some mean dance steps as well.
But 10 months of “hell” later, he died. It was September 2021.
While the bereavement remains raw, Ceri and Frances Menai-Davis are determined to help parents who find themselves in a similar situation.
The couple, from Hertfordshire, want Parliament to introduce Hugh’s Law, which would offer financial assistance when children undergo prolonged hospital treatment.
It would allow parents to “concentrate on helping their child rather than worrying about losing money”.
It has won the backing of their MP Sir Oliver Heald, who said: “I support Ceri and Frances’s inspiring campaign for Hugh’s Law, a Bill to give financial help for the parents of children in hospital for long periods.
“The Bill has support from many senior MPs across the parties and I hope to take it through in the new session starting in November.”
Ceri, a 40-year old company director, and Frances, 39, a trained teacher, have not hidden themselves away since the tragedy.
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As well as lobbying for legal changes they have set up a charity, It’s Never You, which has raised £200,000 to create The Children’s Cancer Platform, brimming with information and advice for parents.
More than 250 families are using the site’s discussion forum. All this as they look after their two other children, Raife and Jude. Hugh’s first symptoms did not point to cancer, said Ceri.
“He was tired and I remember arguing with him about food. Then his tummy distended. It bloated out.
“But Fran said to me, ‘I think we need to take him to the doctors’.
“You never think it will be you, always someone else, hence the title for our charity, It’s Never You.
“But childhood cancer is the biggest killer of children outside of road traffic accidents in the UK.”
The couple said they were disappointed with the immediate support they received, both while Hugh was in hospital and after he died.
Ceri explains: “There were some things we didn’t think were quite right, not only with the way he was treated, but also the way we were treated during and after. For one, we weren’t covered with bereavement care and support during Hugh’s treatment.
“Also, no one phoned from the GP surgery to see if we were OK. You have a community nurse team that goes around the whole village, and had visited Hugh weekly while he was still alive – but that ended after he died.”
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Facilities for parents in hospitals need improvement, too, he said. “There is a parents room, but there’s really no healthy food available.”
And hospital parking is an issue, too, added Frances. “If you were on our ward, you could hand over a card so the maximum amount spent was £5. But if you’re on benefits, that’s an extra £5 added to the cost of your travel.”
Is their campaigning helping with the grief process?
Ceri said: “Fran and I have a different way of dealing with this. I was running the London Marathon to raise money before Hugh died. Fran brought Hugh out in the car to watch me training.
“I said to him, ‘I’ve got a marathon in three weeks, what will I do?’ He said, ‘Go run it, Daddy!’ He went round telling the nurses, ‘Daddy’s going to run around London’.” Ceri added: “The campaign and charity has helped me get through the dark times and focus.”
So what will happen if “Hugh’s Bill” – officially called Children in Hospital for Extended Periods – fails to make it into debates or the next King’s Speech? Ceri, who wants to enter the world of politics one day, said: “We’ve been through hell, but I will always campaign for parents who find themselves in the shoes we walked in. I’m not going to stop.
“One way or another, we will get this through.”
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