A family’s fundraising for research into children’s blood cancer in memory of their teenage daughter has passed £200,000.
Ruby’s Live Kindly Live Loudly Fund, a Special Named Fund at Children’s Cancer and Leukaemia Group (CCLG) was set up in memory of 18-year-old Ruby Fuller, to raise much-needed funds for research into T-cell lymphoma and leukaemia.
Ruby died three years ago in May 2020, after first being diagnosed with T-cell lymphoblastic non-Hodgkin lymphoma, which developed into leukaemia, when aged 17, in July 2019.
The fund was set up by her parents Emma and Dylan after Ruby left a list of ways that family and friends could remember her by, which embodied her caring and compassionate nature. This list included celebrating kindness and calling out injustice by sharing her motto - ‘Live kindly, live loudly’ - far and wide and helping other young cancer patients through fundraising for research.
Emma said:
When we were told that Ruby's cancer was terminal, Ruby's consultant explained that there isn't a reliable treatment yet for the kind of blood cancer Ruby had when it relapses.
Ruby asked us to invite people to donate to research instead of sending flowers after she died, and we've built on that initial idea.
Since starting the fund, Emma and Dylan, alongside Ruby’s sister Tabitha and a legion of supporters, have dedicated themselves to fundraising through various events and challenges, including wing walks, cycle rides, sky dives, comedy nights and cook-alongs, as well as many activities inspired by Ruby and her personality, such as sponsored acts of kindness.
Fundraising through Ruby’s old primary school, Rosemead in Dulwich, took them to the mammoth total of £200,000 including Gift Aid, and thanks to the money they’ve raised, CCLG has been able to fund several new research projects that will further understanding of childhood leukaemia and eventually lead to more effective treatments.
Emma said:
It's really exciting to see new research happening thanks to all the fundraising that's been done in Ruby's memory.
Like everyone who's been horribly affected by cancer, I'm impatient to see new cures and better treatments! I hope these projects can contribute to better outcomes for even a few young people with cancer. That would be wonderful.
Emma said the fundraising – along with awareness raising– has been incredibly important to Ruby’s family and friends, and a fitting way for people to remember someone who cared so deeply about helping others.
She explained:
It's tremendously helpful to have something to channel our grief into, and it's been really helpful for friends and family, too.
Losing a child is so awful, and it impacts on lots of people. So many people wanted to help, but they weren't sure what to do - this gives them a great focus. And it's something that family and friends all over the world can get involved in.
Reflecting on the huge support for the fund since its inception, Emma wanted to say “the most enormous thank you” to all those involved, adding: “I’m deeply touched by the generosity of so many people. It's very much a collective effort - so many wonderful people - friends and family of Ruby's but also complete strangers who were touched by her story - have gotten involved.
“They are helping us keep Ruby's name and memory alive, and to improve outcomes for children diagnosed with blood cancer in the future - how marvellous is that!”
Lizzie Goates, CCLG Fundraising Manager Community & Corporates, said:
We’d like to say a huge well done and thank you to Emma, Dylan, Tabitha and their supporters.
Raising such a huge amount is an incredible achievement and everyone involved should be very proud.
Thanks to their efforts, we’ve been able to fund world-class research that will help us find better, kinder treatments for children’s blood cancers.
Emma said that from conversations with nurses and some of her own calculations, the NHS spent around £500,000 on trying to save Ruby, and that the family plans to keep fundraising with the eventual aim of reaching this amount.
She added:
It’s a way of honouring Ruby’s memory, of creating a legacy for her. I’ll always be her Mum, and this is what she asked us to do, so I’ll keep doing it.
I’ve no idea how or whether we’ll reach that goal, but it’s good to have something to aim for!
The family hope to take a big step towards that target by hosting an online auction, running from 12-21 May, which will mark the third anniversary of Ruby’s death (on May 15).
Emma said:
It's themed around the 'Live Loudly' bit of Ruby's motto - the idea of seizing the moment and living life to the full.
We've got an amazing array of items up for grabs, all generously donated, including a Coldplay guitar inscribed with Ruby's motto and signed by all the band, tickets to see them in Cardiff, a holiday in Tresco where we spent family holidays when Ruby was little, and holidays in Scotland, Devon, the Cotswolds and Norway and lots more!