Ruari was diagnosed with anaplastic large cell lymphoma in 2018. He has been so brave, taking everything that is thrown at him and not once complaining - a true Super Ru. Here, his family share his story...
Our third and youngest little man, Ruairi, was diagnosed with anaplastic large cell lymphoma (ALK negative) in July. It was, and still is, our worst nightmare.
ALCL is responsible for just 1% of childhood cancers and the ALK negative version, is a tiny percentage of these.
In the UK, they have not seen this disease before in a child of Ruairis age. There is no research. There are no case studies in the UK.
We have relied upon national experts to discuss his case, draw on research from similar cancers, look at trials at home and abroad and decide on the best route forward.
He has now started an intensive treatment protocol of chemotherapy drugs and steroids. Our road ahead is scary and uncertain but our gorgeous boy is leading the way through it with his smile as big as ever.
He has been so brave, taking everything that is thrown at him and not once complaining... Our Super Ru.
This wonderful village of ours has created the Super Ru charity and has partnered with Children's Cancer and Leukaemia Group (CCLG), enabling fundraising efforts to be channelled into the most relevant and suitable areas of research for Ru's cancer.
Our hope for this fundraising is to create a pot of funds to support research into ALCL. There are new drugs that have been trialled and licensed in adults in the UK and are currently being trialled in children in the USA. It would be fantastic to be able to support this development and to improve both outcomes, and the long term effects of children treated for ALCL.
Children's Cancer and Leukaemia Group is a charity which provides valuable information to families affected by childhood cancers. But, more importantly to us, it provides a forum for professionals from around the world to share best practice and funds vital research to both improve outcomes, and lessen the lasting effects of treatment, for children with cancer.
Make a donation to Super Ru
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Open an online fundraising page for Super Ru
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News
Clothes sale raises £13,000
Research projects funded
Developing a new understanding of the genetics of a rare lymphoma subtype
Fundraising pages
Text CCLGRUARI 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 Super Ru so that your donation is allocated to the correct fund.
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