The mum of a teenager who died of blood cancer on the same day as the Downing Street parties took place has raised £200,000 in memory of her little girl.
Ruby Fuller was just 18 years old when she died peacefully at home in May 2020 – just three weeks after doctors informed her that her cancer was incurable.
Her heartbreaking death hit the headlines during the pandemic after her mum, Emma Jones, 53, shared her anger about having adhered to lockdown rules, following the news about partygate.
Emma talked about how her daughter had been unable to say a proper goodbye to her friends, grandparents or cousins – having had to do so via Zoom due to social distancing guidelines.
Following Ruby’s death, the family launched a project called ‘Live Kindly, Live Loudly’ – which was the teenager’s life motto – and hope to raise £500,000 for research into T-cell lymphoma and leukaemia.
They have just hit a milestone – with Emma revealing that they have received £200,000 in funds so far.
“Ruby was smart and outgoing, but she believed that being kind was the most important thing in the world,” Emma, an environmental consultant from London, told Jam Press.
“Before she died, she asked us to raise money in her memory.
“She wanted to fund research into more effective treatments for T-cell blood cancer.
“Ruby was halfway through her A Levels when she started experiencing symptoms.
“She was tired and her face was swollen.
“Her GP later referred her for an X-ray, which revealed that she had a tumour in her chest.
“The tumour itself was determined to have been caused by T-cell acute lymphoblastic lymphoma.
“It was absolutely devastating and turned our world upside down.
“Ruby had to stop going to school – her A levels and uni plans were all put on hold, as much of her treatment had to be as an inpatient.
“[After Ruby was diagnosed and due to her care], my husband had to stop working altogether and I had to cut down to a few days a month.
“We’re both self-employed, so that meant our income practically dried up, and we used up all our savings during that time.”
T-cell blood cancer is rare and often aggressive.
The prognosis for recovery is relatively high unless the patient relapses, which Ruby unfortunately did.
Doctors started Ruby on chemotherapy immediately.
When that didn’t work, she was given more intensive chemotherapy that required her to stay in the hospital.
Emma said: “It was really tough.
“Ruby spent around six months in the hospital, and either I or my husband were with her all the time.
“We’d swap every few days, bringing her younger sister with us.
“We’d typically have time together as a family on Wednesday evenings and on Sundays.
“It was really hard for our younger daughter Tabitha; everything revolved around Ruby during that period.
“But we did everything we could to enjoy our family time together in the hospital; playing board games together or watching movies.
”Doctors gave Ruby a stem cell transplant from a match that was found through the Anthony Nolan charity.
“She came home in February 2020 after over 200 nights in hospital.
“The brief periods when Ruby was home were so lovely; we really enjoyed spending that time together as a family.”
However, during a regular check-up a few months later, doctors gave Ruby and her family devastating news – the cancer had returned and was now presenting as leukaemia.
There was nothing more they could do.
Ruby died three weeks later, leaving her family devastated.
Emma said: “It was incredibly upsetting to hear about ‘partygate’.
“Ruby hadn’t been able to see her friends or most of her family and had to say goodbye to them on Zoom.
“We couldn’t come together after she died – the rules at the time were that you could only have 10 people at a funeral, all maintaining a distance of two metres from each other.
“All the while [politicians] were holding parties and acting like the rules – which they’d set – didn’t apply to them.”
The family have since set up a fund in Ruby’s name, the ‘Live Kindly, Live Loudly’ Fund, which has raised more than £213,000.
Emma said: “We set up the fund a couple of months after Ruby died.
“It’s brought huge comfort to us.
“It’s also given Ruby’s family and friends something positive to channel their grief into.”
Recently, Ruby’s little sister Tabitha was even able to travel to Newcastle to do work experience with the team supported by Ruby’s fund.
Emma said: “I think Ruby would be really proud about what her friends and family have achieved in her memory.
“She would be so happy to know that there is research happening now, thanks to our fundraising, which will improve prospects for young people with this kind of cancer in future, and she would have been so incredibly proud of her little sister doing work experience with the research team.
“This research won’t be funded by big pharmaceutical companies as the potential returns for them just aren’t big enough – so it’s up to bereaved families to plug that gap.
“We still have a long way to go but we’re determined to reach our goal of £500,000, which is roughly what [we believe] the NHS spent trying to save Ruby based on snippets of conversation with Ruby’s main oncology nurses, plus a bit of Googling.
“I really believe that, through research, we’ll be able to find treatments that ensure that one day, all young people with cancer survive.”
Donation page: https://specialnamedfunds.cclg.org.uk/rubys-live-kindly-live-loudly-fund/
