A robust refusal to give in steered Ceri and Frances Menai-Davis through the death of their six-year-old son and continues to drive their campaign to establish a law in his name.
It took only months for their son Hugh – diagnosed with cancer in October 2020 – to succumb to rhabdomyosarcoma, a rare form of the disease that forms in soft tissue, or hollow organs like the bladder or uterus.
Yet, before Hugh’s passing in September 2021, this remarkable couple – shocked by the lack of support for parents trying to navigate the rollercoaster of caring for a seriously sick child – launched a charity, It’s Never You, to help them.
Ceri, 41, and Frances, 39 – who share their Hertfordshire home with their younger sons Raife, now six, and Jude, two – then came within a whisker of having a law brought in giving parents in this situation furlough-style payments, only for a change of government to derail its progress.
But with four children diagnosed with cancer in the UK every day, their fight continues.
On Thursday (August 29) – the day before what would have been Hugh’s 9th birthday, and ahead of Childhood Cancer Awareness Month in September – they held a peaceful demo on London’s Parliament Square asking the government for better support, accompanied by their MP Chris Hinchliff.
Ceri tells The Mirror : “We have started a petition which has around 8,500 signatures but needs to reach 10,000 signatures and we’d love it if other parents could sign it.”
Labour MP for North East Hertfordshire Chris Hinchliff adds: “As a new MP, I will do whatever I can to help Ceri and Frances secure the legacy Hugh deserves.”
And on September 2, Ceri, a business owner, and Frances, a charity worker, will visit Downing Street to hand Keir Starmer a letter and their petition, stressing the need for Hugh’s Law, and ask him to use his April 2025 Budget to support parents of sick children.
Ceri will be wearing a bespoke jacket with 250 names on it – which is still being made – in memory of 250 children who have all died from cancer.
He says: “We are calling on Keir Starmer to set money aside as every day that passes, parents are suffering. Hugh’s Law could make a massive difference to these families.”
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Philip Coburn)
The feelings of despair and isolation they experienced when Hugh was diagnosed continue to haunt the couple, who say the added burden of financial worries – as caring duties often make working impossible for parents – can become unbearable.
Dad Ceri adds: “Being in a children’s cancer ward is the most humbling, traumatic experience you can ever imagine.
“Seeing so many other sick children was heartbreaking. The last thing parents need to worry about is money.
“There is support when a child takes their first breath, but none when the child takes their last breath or has to stay in hospital for an extended period of time – it just doesn’t make sense.”
If Hugh’s Law – which had its second reading in January – is brought in, financial support will be offered to parents from day one.
The couple also want lenders to offer mortgage breaks and are looking into whether council tax reductions could be offered.
They would like the UK to be brought in line with countries like Germany, where workers with seriously ill children are offered up to 70 days’ leave depending on how many children they have.
A new law will not bring Hugh back but Ceri, who feels deep pain when recalling the rapid hold cancer took on his son, would like to do something to help with life’s practicalities for parents facing this depth of trauma.
Ceri, who relied on savings while caring for Hugh, recalls: “We noticed Hugh’s tummy was hugely distended, but we thought it was a reaction to something he’d eaten or appendicitis.
“When I heard the word cancer I felt cold, completely numb.”
Hugh even went into remission – ringing the bell at Cambridge’s Addenbrooke’s Hospital on May 23, 2021 – following months of radiotherapy and chemotherapy.
“We thought we were winning,” Ceri says. “Then celebrating his sixth birthday a few months after was so special, because all the family came together for the first time after Covid.
“Hugh and his cousins were having a great time bouncing on the trampoline and smashing the pinata. He was off his food and couldn’t eat his cake, but we put that down to his chemotherapy.”
A week after his birthday celebration, when he was supposed to go back to school, everything changed.
Noticing that his stomach had bloated again, his parents took him to hospital and two days later doctors told them there was nothing more they could do.
Hugh passed away on September 18, 2021 – just 10 days after turning six.
“I see Hugh’s friends who are now nine and it makes me wonder what he would look like,” Ceri adds. “Every card we write we sign from me, Frances, Raife, Jude and H. Hugh is with us and will always be a part of our family. We want to keep his memory alive.”
And the couple, who also run the Children’s Cancer Platform app – providing podcasts to help parents needing mental health support – feel compelled to do something positive for other families in his name.
Explaining how difficult it is for parents to cope financially, Frances says: “You have the Disability Living Allowance, but it can take three to six months for that to come through.
“Usually, one parent has to give up work to become a full-time caregiver and the costs start to add up like travel, eating at the hospital and fuel. Currently, there is no state support unless you are on Universal Credit at the time of your child’s diagnosis. Parents who were working or self-employed struggle to cover their outgoings.
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Philip Coburn)
“We have known parents who have had to sell their house. Others have even been let go from their jobs because their employers couldn’t keep their positions open while they took time off to give care.”
Parents can take 18 weeks of unpaid parental leave within a calendar year, which must be in four-week blocks.
Hugh’s Law would introduce a grant-style payment for the first three months after a cancer diagnosis to cover the shortfall before DLA comes into effect.
“It would be just a drop in the ocean for the Government,” says Frances.
Hugh’s Law had its second reading in Parliament on January 19 and was backed by Labour, but it was left in limbo because of the general election.
“The election was called just hours after our last meeting with Jo Churchill, the previous Minister for Employment,” Ceri says. “I sat and watched Rishi Sunak announce the election knowing that it was all over. We were heartbroken.”
But Ceri has bounced back and is ready to fight again – already harnessing the support of his new MP.
Chris Hinchcliff tells The Mirror: “Ceri and Frances are bringing the nation’s attention to a hugely important issue.
“No parent should suffer financial hardship because they are caring for a terminally ill child. Hugh’s Law will ensure families finally have the support they need to focus on caring for their children in the most difficult of circumstances.”
You can sign the petition here: https://chng.it/2BDDVzj9cN