A father said he wants to create “a legacy” for his six-year-old son who died of cancer after delivering a petition to Parliament that would provide better financial support for parents of children requiring lengthy hospital care.
Ceri Menai-Davis from Hertford went to Downing Street on Thursday, which marked two years to the day since he laid to rest his son, Hugh, who died from a rare form of cancer.
Mr Menai-Davis, 40, delivered a petition for Hugh’s Law, which is designed to provide furlough-style payment for parents caring for their sick child in hospital for an extended period of time.
Mr Menai-Davis noticed a lack of support for parents with terminally-ill children but now hopes to create a “living memory” for Hugh who died in September 2021.
“But what I can do is create a living memory for him that everyone will know what his courage, his bravery was, and that’s what gives us the strength to carry on with Hugh’s Law.”
He said that he and his wife, Frances, found “purpose for our pain” providing a legacy for children undergoing treatment.
He explained: “In the space of two years, through grief, you feel like you don’t want to move forward but we found a purpose for our pain and wanted to make a change.
“It’s a legacy for our son and a legacy for all those other children that are still going through and unfortunately have been affected alongside it.”
He added: “If they can discuss this in Parliament, I’m not sure anyone will be heartless enough to turn it down.
“It’s one of those things that just needs to be talked about.”
During Hugh’s six-month intensive chemotherapy radiation treatment, Mr Menai-Davis felt there was a lack of support for parents with terminally ill children.
Following Hugh’s death in September 2021, Mr Menai-Davis felt there was an “injustice” and contacted his local MP Oliver Heald for East and North Hertfordshire sparking the idea to create Hugh’s Law.
He said: “We’re handing over this petition and this seven-point manifesto as we want (the government) to acknowledge that there are shortcomings, and what we want to do is highlight those and for them to take on board and put something into action.
“We need time to debate in Parliament and fingers crossed Oliver Heald will get it into the King’s speech on November 7 and that will really help our cause.”
He explained: “‘It’s never you’ were the first words that Frances said to me when Hugh was diagnosed.
“She said ‘you always think it’s someone else, it’s never you’ and I think that’s quite apt.”
He hopes the work of his charity and his petition for Hugh’s Law will “make a change” for parents experiencing similar hardships.
“If you want to make a change, change doesn’t happen when you just sit at home, you have to go out and get it. The world doesn’t come to you, you’ve got to go to it,” he said.
“We just want to make sure that we change everything for these parents who are going through such a rough time.”