Financial support for families of children with long-term illnesses is a step closer, thanks to campaigning by two bereaved parents.
The government has committed to consulting parents of sick children about new proposals that could see families receiving additional money under 'Hugh's law', named after Hugh Menai-Davis who died in 2021.
He was a boisterous five-year-old. But in autumn 2020 he became tired and subdued, complaining of a sore stomach.
A visit to the doctors, quickly led to hospital. Then came the words no parent should ever hear.
"The doctor sat us down and said Hugh's got cancer," said the boy's father, Ceri Menai-Davies.
Hugh was treated for a rare type of soft tissue cancer. But ten months after diagnosis, having just turned six, he passed away.
In the months Hugh was in hospital, juggling staying at his bedside with work and looking after their younger son Raife took its toll on Ceri and Frances and not just emotionally - there was also the financial impact.
"We know parents at the moment that are weighing up the decision whether to sell their clothes or sell the house, or can they travel into hospital… the parking - everything adds up," said Ceri.
It was that struggle that inspired them to take action - first contacting their MP Sir Oliver Heald, who took up their cause and delivered a petition to Downing Street.
"It almost feels like a loophole," explained Frances.
"When we speak to people, people are shocked. Why isn't there anything for parents and why hasn't this been mentioned before?"
4,000 parents a year spend more than two months in hospital
Sir Oliver, MP for North East Hertfordshire, presented the Private Member's Bill for its second reading on 19 January.
"About 4,000 children a year spend more than two months continuously in hospital," he said.
"But for those parents, it is a huge, huge burden to support their child but still perhaps to have to worry about money."
Work and pensions minister Jo Churchill responded by telling the Commons: "I stand here as somebody who has had cancer more than once, you don't choose it, it chooses you".
She made a commitment to establish a stakeholder forum of parents, charities and healthcare professionals to "understand their concerns, listen to ideas and suggestions".
Sir Oliver said he was "delighted" by the government's response and withdrew his bill so that the plans for the stakeholder forum could progress.
The hope is that the government would offer financial support like the COVID furlough scheme for parents coping with the pressures of having a child in hospital for an extended period.
Paediatric consultant Jack Bartam has met many parents in a similar situation and welcomes the plan.
"Families need time. They need psychological support. They need to be able to be present with their child at all times," he said.
"Any change in policy or any scheme that allows family members to spend more time at the bedside of their child is the most important thing."
When Hugh was diagnosed, Frances said to her husband: "You always think it's someone else. It's never you."
Those words, "It's Never You" have now become the name of their charity, offering parents of children with cancer information and support but also a platform to communicate with one another.
The couple have had a third son called Jude since Hugh died.
He and Raife, who's five now, will grow up without their big brother, but there's no doubt his legacy will have a lasting impact.