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Super Ruby's Rhabdo Raisers

3 team members

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

Team story

[p]Thank you for visiting our page! [/p][p]This main event started as a little 'what if'. The 'what if' grew into an idea and as the idea was said out loud, it snowballed into a plan. Initially hoped to find 3 people to jump into this with me; but here we are. All 16 of us. We have all signed up to run in the Hairy Haggis relay at the 2020 Edinburgh Marathon Festival. In our midst there is a 'varied' skill set when it comes to moving. Some of us love running and are great, some love the idea of it but perform more of a wobble, another one or 2 haven't laced up trainers for years and this will be the first trainer lacing others! [/p][p]We may be many, but the mighty - the one we're doing this for, is someone else entirely. [/p][p]If you haven't heard of Ruby or her journey, please keep reading. And as you've come this far, please donate - a little or a lot, whatever you are able to - to help Ruby and other little humans like her.[/p][p][i]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.[/i][/p][p][i]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.[/i][/p][p][i]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. We are currently waiting to find out what treatment she will receive now. It will be a case of managing the disease and prolonging her life for as long as possible; the prognosis is extremely poor.[/i][/p][p][i]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.[/i][/p][p][i]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.[/i][/p][p][i]Update:[/i][/p][p][i]On 7th October she started a new protocol because she had tumours in her back that weren’t responding to treatment. We were aware of the one we could see at T7, we weren’t aware of the one lower down at L1.[/i][/p][p][i]While we were away in Disneyland she complained of sore “hips” and wobbly legs.[/i][/p][p][i]Since returning from Disneyland on 19th October, her legs got increasingly wobbly and the pain in her “hips” became unbearable. The reason for both of these things is a large tumour wrapping around L1 in her spine, pressing on her spinal cord. She is currently paraplegic. Her pain, thankfully, is now pretty well managed.[/i][/p][p][i]The new protocol had a number of difficult side effects, the worst being somnolence. Due to this, we have stopped the main culprit - thalidomide.[/i][/p][p][i]So, we now need a treatment that shrinks the tumour followed by a treatment that stops it growing again. Sounds simple, right? The problem is, the cancer Ruby has is very aggressive and difficult to target. She’s already had all of the chemotherapy known to be effective against rhabdomyosarcoma (RMS) and that means it’s unlikely to be effective again. There are a few agents she hasn’t had, one of which she’s on now, but there are no guarantees they will work.[/i][/p][p][i]She is due to receive radiotherapy in December (not sooner because it’s very complex to plan and more scans are needed) - that should help, but it’s temporary.[/i][/p][p][i]We have discussed Ruby’s case with one of the best rhabdo doctors in the US. Ruby’s treatment has been discussed at UK level expert groups. There is no roadmap for where to go next. The advice is we can try x. If that doesn’t work we can try y or z. There may be a couple of clinical trial options but both require specific genetic markers which we don’t know whether Ruby’s cancer has. We’re waiting for that information from GOSH.[/i][/p][p][i]So she’s not in a good position. No patient with relapsed stage IV ARMS is. That’s why we fundraise and started her named fund with CCLG. We need to find a cure or a way to successfully manage this disease.[/i][/p][p][i]Today, when she found out she was going to Lapland, she said “even if I’m sore on the outside I’ll have a smile on the inside”. That’s our girl 💜[/i][/p][p][br][/p][p]There are a few side events this year too, for which we'll happily let you sponsor or pay us for! A Marcothon here, a 10km there, a dash of half kilomathon in the middle. Hopefully we'll manage to smile through the miles even half as much as Ruby does.[/p]
Super Ruby's Rhabdo Raisers image 1
Super Ruby's Rhabdo Raisers image 2

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Supporters

Dec 21, 2019

Pharmacy team

Money raised from a raffle held at Ruby’s dads work, hopefully this will help into research for this terrible disease

£900.00

Dec 19, 2019

Anonymous

Coral and carol

£10.00 plus £2.50 Gift Aid

Dec 19, 2019

Steph Morris

:D Good luck Hayley

£5.00 plus £1.25 Gift Aid

Dec 19, 2019

Anonymous

£5.00 plus £1.25 Gift Aid

Oct 8, 2019

Denise

Money raised in Ancrum pub

£63.00 plus £15.75 Gift Aid

Hayley Grant

Hayley Grant

Fiona Adam

Fiona Adam

Nikki Grogan

Nikki Grogan