Ruby was four years old when in 2017 she was diagnosed with IV alveolar rhabdomyosarcoma. She sadly passed away less than 3 years later after relapsing. Her parents Claire and Andy share her story...
Ruby was diagnosed with stage IV alveolar rhabdomyosarcoma in September 2017. She was just four years old and had just started school. The only sign there was anything wrong with Ruby was a subtle swelling in her left ankle.
Scans revealed metastases in the muscle in her spine, her pelvic area and lungs. Within weeks she couldn’t walk or stand due to the tumour in her back impeding her spinal cord. She started intensive chemotherapy straight away. The effect was almost immediate - the tumours started to melt away and Ruby started to get sensation back in her legs. She gradually learned to walk again.
Following nine cycles of chemotherapy and six weeks of radiotherapy she was in remission. She continued with maintenance treatment for six months and had stable scans in November 2018.
In February 2019 she complained of a sore back and scans revealed relapse with disease progression in both legs, her spine and pelvic area. The disease had returned in the areas treated with intense radiotherapy. Moving forward our only treatment options were to manage the disease and prolong her life for as long as possible.
Ruby faced it all so bravely as she always did. In her final few months we took her on a trip to Lapland where she was so happy to meet Santa and feed his reindeer. She was even involved in co-writing ‘The Unicorn with the Ruby Horn’, a story book that brought her love of unicorns to life.
Ruby passed away peacefully on 3rd January 2020.
The prognosis for rhabdomyosarcoma is extremely poor as it’s a very rare muscle cancer which mainly affects children. The alveolar type that Ruby had was very aggressive. New treatments are urgently needed both to cure this horrible disease and also to reduce the side effects of treatment, both acute and long term.
We set up this fund to contribute what we can, along with other CCLG Special Named Funds, to research into new treatments. We don’t want any more families to have to go through what we have.
Ruby was an amazing little girl. Her laugh was infectious, it filled our lives with happiness and light. She was always fantastically resilient, optimistic, strong, friendly, noisy, enthusiastic, determined, funny and so much more besides. If we couldn’t find a treatment to save her then we want to help find something that saves others and we know she would want the same.
We also want to encourage people to ‘Be More Ruby’, ensuring her strength, courage and bravery live on by being more like her. This, along with ‘The Unicorn with the Ruby Horn’ and helping others through the funds we raise in her memory, are her lasting legacy.
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Ruby's shop
Ruby's Giant Jump was a huge success in July! Thank you to all those who supported!
News
CCLG marks World Book Day for Ruby
Ruby inspires an amazing £21,600 in fundraising
Ruby's legacy reaches an incredible £100,000!
Research projects funded
A molecular approach to predict recurrence or spread of cancer that will lead to improving outcomes for children with rhabdomyosarcoma
Understanding treatment decision making processes in families where a child or young person has relapsed or refractory rhabdomyosarcoma
Novel models and new treatments for relapsed rhabdomyosarcoma patients
A living review of new treatments for children and young people with relapsed and refractory rhabdomyosarcoma
Learning to predict high-risk rhabdomyosarcoma at diagnosis to improve outcomes for children and young people
Investigating the shape of fusion genes in rhabdomyosarcoma
New treatments for relapsed rhabdomyosarcoma
Fundraising pages
Text CCLGRUBY to 70450 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 Ruby's Rhabdo Raiser so that your donation is allocated to the correct fund.
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