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. Ruby was 17 years old when diagnosed with T-cell lymphoblastic non-Hodgkins lymphoma in 2019, which developed into leukaemia.
Ruby's Mum, Emma, tells her story.
Ruby was a happy, healthy, normal 17 year old, half way through her A levels, when she started to feel unwell. It was June 2019, and the GP thought it was allergies causing her to feel tired and her face to swell. But after ripping out old carpets, changing her bedding and buying an air purifier, her symptoms only seemed to worsen. After six more GP visits, she was finally referred to hospital for a chest x-ray which shows a large tumour in her chest, caused by T-cell acute lymphoblastic lymphoma – a rare and aggressive type of blood cancer.
They started her on chemotherapy right away, but the cancer didn’t respond sufficiently so switched her to very intensive chemo which meant spending many weeks in hospital while she was monitored for infections.
The doctors decided that a stem cell transplant offered the best chance of a cure. No-one in her family was a match but, through the Anthony Nolan charity, a matched donor was found. The transplant process was pretty brutal and left her feeling ghastly for a week or two, but then she started to feel better and made an amazing recovery. After almost 200 nights in hospital, she came home at the end of February, shortly before the country went into COVID lockdown.
As she was going to have to be in isolation for six months anyway, we weren't too bothered by lockdown. We spent a few lovely weeks together at home, playing boardgames, watching movies and enjoying each other’s company. Then at a regular check-up, we got the devastating news that her cancer was back. It had morphed into leukaemia and, because it had come back so quickly after transplant, there was no hope of a cure. The cancer was incredibly aggressive and she died just three weeks later, in May 2020.
With the fantastic support of our local hospice (St Christopher’s), Ruby died peacefully at home, with her family and her beloved cats.
Ruby was kind and smart and the life and soul of the party. Above all, she had a fantastic sense of humour which kept us all going through even the darkest times. And she was so brave. She wasn't scared of dying, but she was scared of how others would be affected by her death.
Ruby believed that 'being kind' is the most important thing in the world; to people, animals, and the planet. Having been quiet as a young child, she had grown so much in confidence as a teenager. She really found her voice - as an activist on climate marches and political protests, and as head girl at her school. Knowing she didn’t have long to live, she asked to be remembered by the motto Live Kindly, Live Loudly. The 'Loudly' bit is about calling out injustice or unkindness.
After she died, Ruby's consultant told us that they just haven't yet figured out how to successfully treat T-cell blood cancers when they relapse, but how she fervently hoped that they would very soon. The only way they will do that is with funding. That’s why we’ve set up this fund in Ruby’s memory with CCLG. We want to improve the chances of others who are unlucky enough to be diagnosed with this in future.
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News
Ruby's Funds go into vital blood cancer research
Remembering kind-hearted Ruby one year on
London tube challenge for Ruby
Research projects funded
Investigating how regulatory regions of the genome communicate with cancer causing genes
Identifying a new type of blood cancer to improve the outlook for patients with acute lymphoblastic leukaemia
What factors affect the survival of children and young people with high-risk acute lymphoblastic leukaemia?
Understanding why some childhood blood cancers are incurable.
Fundraising pages
Text CCLGRUBY to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Ruby's 'Live Kindly, Live Loudly' Fund so that your donation is allocated to the correct fund.
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