Parents of critically ill children are being “crushed” by a lack of statutory financial support when they need to take time off work, the parents of a six-year-old boy who died of cancer have said.

Hugh Menai-Davis was diagnosed with a rare form of the disease when he fell ill suddenly in October 2020. The boy, then aged five, had been happy and healthy before he developed severe stomach pains.

A GP initially told Hugh’s mother, Frances Menai-Davis, over the phone that it was probably gastroenteritis and would pass in a few days. She decided to take Hugh to hospital after growing concerned about his abnormally swollen stomach.

Tests showed Hugh had a rare type of cancer called rhabdomyosarcoma, which affects muscles attached to the bone and is diagnosed in about 50 children every year.

He underwent 10 months of treatment, including 16 weeks of intense radiotherapy, when his parents had to sacrifice work to be at his bedside at Addenbrooke’s hospital in Cambridge.

Although the treatment was initially successful – Hugh was “jumping around the house” and the family thought he had overcome the disease – the cancer remained. Hugh died the following September.

His father, Ceri Menai-Davis, said the nightmare of seeing their son seriously ill was worsened by worrying whether they could afford to be at his hospital bedside. They realised there was a “devastating” gap in the support afforded to families whose children are seriously ill.

At present, parents of babies who are born unwell are entitled to financial support under UK law – however, this stops once the child is a month old.

Ceri Menai-Davis, 42, said this meant parents of critically ill children were expected to either take four weeks of unpaid leave, five days of unpaid carer’s leave, or apply for benefits, which are often slow to process and exclude many.

“Parents are being forced to make impossible decisions between staying by their child’s bedside or going to work to keep a roof over their heads. That pressure should never sit on a family in crisis,” he said.

The family are pushing for a new statutory provision – known as Hugh’s law – entitling the parents of children in hospital long-term to financial support.

Ministers have agreed to consider the policy as part of a review launched in November. About 4,000 children a year spend more than two months continuously in hospital.

The Premier League football club Brentford will become the first UK company to adopt the principles of Hugh’s law on Monday, when its staff will be entitled to 12 weeks of full pay if a child becomes seriously ill.

Menai-Davis, from Hertfordshire, said it was “overwhelming” to see the club take up its proposals and for the government to be considering introducing it as a policy.

“When Hugh passed away, we made a vow that we would work as hard as we could to change the life of at least one person in his name,” he said. “What we now hear daily from families is that alongside the absolute nightmare of watching their child fight for their life, there is a constant, crushing fear about money and work.

“Even if this helps just one parent, one family, then we have succeeded. To see Hugh’s name written into policy feels like purpose pulled from pain. Wherever Hugh is, I know he would be proud of his mum and dad.”

Nity Raj, Brentford FC’s general counsel, said there was “no question” the club would introduce the support when they heard about Hugh’s case.

He said: “Anyone who faces the tragic situation of a critically ill child is undoubtedly experiencing an extremely challenging and distressing time; work should not be an added pressure or worry.

“Our people are important to us and staff wellbeing is a priority for the club. By adopting this policy, which provides paid leave and employment protection, we hope we can provide a source of support and reassurance at a time when it is needed most so families can focus on caregiving responsibilities.”