Teenage blood cancer patient Ruby Fuller died on the same day that Boris Johnson partied with his wife and colleagues in Downing Street - having spent her final days separated from family and friends.
Now nearly two years on from the 18-year-old's death, her grieving mum Emma Jones has spoken of both the family's enduring heartache and their bitterness at the PM who "has demonstrated that he has no moral compass."
Emma has revealed that Ruby was determined "to do the right thing" and obey Covid rules as the first wave of the pandemic still held the UK in its grip.
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She spent her last cherished moments with her parents and younger sister as Emma says they tried to give her "the best possible end of life". A week before her death, her parents took their last ever photo of their cherished daughter - pictured in a hot tub with her dad outside the family home in Crystal Palace, south London.
Loved ones were barred from joining them and Ruby had to say her goodbyes on Zoom. The brave teenager died on May 15, 2020 - the same day Boris Johnson was pictured enjoying cheese and wine with his wife and colleagues in a Downing Street garden.
Speaking to The Mirror after the PM was fined £50 for attending another rule-breaking birthday gathering, Emma, 52, said Ruby would have been "mad" at Boris Johnson's behaviour.
The environmental consultant, said: "While Boris and Rishi partied, we tried to give Ruby the best possible end of life. A hot tub and a blow up flamingo were all we could manage. No friends, grandparents or cousins. Not even for 10 minutes. She had to say goodbye on Zoom. We deserve better."
Ruby was just 17 when she was diagnosed with T-cell lymphoblastic non-Hodgkins lymphoma, which developed into leukaemia.
Emma said it had been just the four of them during lockdown. "It was really hard - and it was really hard afterwards. It's such a devastating thing to watch your child die, then you're left with just each other, crippled by grief, and you can't even open your doors and let people pour in with their love.
"It was always going to be the most desperately sad and hard time but the rules made it harder. But at the time we didn't begrudge that. We were living in a pandemic and we were doing what everybody had to do - there were no exceptions.
"So when it came to light that the people making the rules were not in it with us, it became very insulting. It's not even rules - it's the law. He [Boris Johnson] has demonstrated that he has no moral compass.
"It's so frustrating that we didn't seem to have a choice."
Emma revealed that they had thought Ruby was going to get better until three weeks before her death. She spent her final weeks with her parents Emma and Dylan and her younger sister Tabitha, now 15, in a bubble at their home.
They watched films, had ice cream deliveried and played board games, and a friend lent them a hot tub. Ruby's godmother sent them a blow-up flamingo - and they managed to create some special memories.
Emma recalled: "Ruby would be on Zoom calls with her friends and family. We had a Zoom quiz with my family the day before Ruby died."
Emma said Ruby would have loved to have had her friends, grandparents and cousins with her at the end - but she refused to put anyone at risk. "We did talk about whether we would ask them to come even though it was against the rules, but she felt like she didn't want to put other people at risk.
"She had always followed the rules and felt very strongly about doing the right thing."
The family couldn't have a proper funeral after Ruby passed away. They put a bench in their garden where people could come - one at a time - and write memories and share photos while Emma and the family spoke to them from an upstairs window.
Despite everything that's happened, Emma says she is glad they stuck to the rules because if someone had caught Covid from visiting them "that would have made something so sad so much worse."
"When you're looking after someone at their end of life, what they want is paramount. I don't regret what we did at all. People would have been put at risk. I just regret that we didn't have a leader who can lead by example.
"Ruby would be so mad about Boris Johnson's behaviour so I'm doing it [speaking out] for her. She would want people to know about the sacrifices she, her family and friends made and how utterly insulting the Prime Minister's behaviour is."
Ruby asked to be remembered by the motto 'live kindly, live loudly,' her mum says.
The family are now trying to raise £500,000 to fund research into T-cell blood cancers.
Ruby's 'Live Kindly, Live Loudly' Fund is a Special Named Fund at CCLG raising money for research into T-cell lymphoma and leukaemia in memory of 18-year-old Ruby Fuller. To donate, click here.
