Super Ruby's Rhabdo Raiser

Super Ruby's Rhabdo Raiser is a Special Named Fund at CCLG, raising funds for research into rhabdomyosarcoma.

Ruby was diagnosed with stage IV alveolar rhabdomyosarcoma in September 2017. She was 4 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 9 cycles of chemotherapy and 6 weeks of radiotherapy she was in remission. She continued with maintenance treatment for 6 months and had stable scans in November 2018. In February 2019 she complained of a sore back. scans revealed relapse with disease progression in both legs, her spine and pelvic area. The disease has returned in the areas treated with intense radiotherapy. It will be a case of managing the disease and prolonging her life for as long as possible; the prognosis is extremely poor. 

Rhabdomyosarcoma is a very rare muscle cancer which mainly affects children. The alveolar type that Ruby has is very aggressive. New treatments are urgently needed both to cure this horrible disease and also to reduce the side effects or treatment, both acute and long term. We have 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’re going through.

Ruby is an amazing little girl. Her laugh is infectious, it fills our lives with happiness and light. She is fantastically resilient, optimistic, strong, friendly, noisy, enthusiastic, determined, funny and so much more besides. If we can’t find a treatment to save her, then we want to help find something that saves others and we know she wants the same. She doesn’t want anyone else to have what she has.

From this page you can make a donation to Super Ruby's Rhabdo Raiser, or open your own fundraising page for your event.

For more ways to get involved, visit our website.

You can also text CCLG 5 RUBY to 70300 to donate £3.