The parents of a six-year-old boy who died from a rare cancer have launched a powerful campaign, warning that families with critically-ill children are being "crushed" by a lack of statutory financial support when they need to take time off work.
The devastating diagnosis and a gap in support
Ceri and Frances Menai-Davis, from Hertfordshire, faced every parent's worst nightmare when their son Hugh suddenly fell ill in October 2020. The previously happy and healthy five-year-old developed severe stomach pains. After a GP initially suggested it was gastroenteritis, his mother's concern over his swollen stomach led them to Addenbrooke's Hospital in Cambridge.
Tests revealed Hugh had rhabdomyosarcoma, a rare muscle-affecting cancer diagnosed in only about 50 UK children annually. His treatment spanned ten gruelling months, including 16 weeks of intense radiotherapy, during which both parents had to sacrifice work to be at his bedside.
While the treatment initially seemed successful, the cancer remained. Hugh Menai-Davis died in September 2021.
Ceri Menai-Davis, 42, explained that the trauma of their son's illness was compounded by acute financial worry. They discovered a "devastating" gap in UK law: while parents of babies born unwell receive statutory support, this provision stops once the child is one month old.
The impossible choice: bedside or bills?
This legal shortfall means parents of older critically-ill children are left with stark choices: taking up to four weeks of unpaid leave, using just five days of unpaid carer's leave, or navigating often slow and exclusionary benefits applications.
"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," said Ceri Menai-Davis. "That pressure should never sit on a family in crisis."
In response, the family is campaigning for "Hugh's Law" – a new statutory provision to give parents of children in long-term hospital care a right to financial support. The government has agreed to consider the policy as part of a review launched in November; an estimated 4,000 children a year spend more than two months continuously in hospital.
First corporate adoption and a vow fulfilled
In a significant first, Premier League football club Brentford FC will adopt the principles of Hugh's Law. From Monday, its staff will be entitled to 12 weeks of full pay if a child becomes seriously ill.
Nity Raj, Brentford FC's general counsel, stated there was "no question" about introducing the support after hearing Hugh's story, aiming to remove work as an added worry during a family's most distressing time.
For Hugh's parents, this corporate move and the government's consideration mark a poignant step. "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," Ceri said. "To see Hugh's name written into policy feels like purpose pulled from pain."
