For immediate release: 14 March 2015
YOUNG YORKSHIRE MUM’S CAMPAIGN FOR 100,000 PETITION SIGNATURES
Bridlington’s Laura Todd fights for “last-resort” drug to treat her rare GIST cancer
Laura Todd is just 31. She lives in Bridlington with fiancée Christopher and their lovely daughter Amber. In 2006 she was diagnosed with Gastrointestinal Stromal Tumour (GIST), a rare cancer found in the digestive system. She’d been unwell for a long time when doctors finally discovered a large tumour in her small intestine which had to be removed. She was told in 2012 that she had metastasis in her liver. There is currently no cure for inoperable GIST, but targeted drugs enable a patient to live for considerably longer without the disease progressing. This provides both quality time with their families and additional opportunities for research into finding a cure to continue.
One of these vital, “last resort” life-extending drugs is Regorafenib but recently Laura learnt that this will no longer be available to her following its removal from the Cancer Drugs Fund with no right of appeal. Philip Hunt, Labour’s Deputy Leader in the Lords called this decision “extraordinary and perverse”.
Naturally Laura was devastated by this news, “I’m just 31 and I’ve already been through so much what with being diagnosed and then learning to live with GIST. My daughter Amber has a similar medical condition to Harvey, Katie Price’s son, and requires a huge amount of care and special medication. Amber’s blind in one eye and has quite severely impaired vision in the other. She has to have injections every night and we carry emergency medical supplies wherever we go. I’m not one for complaining and we were doing ok but the news that Regorafenib would not be available to me was a huge shock and for a time I just felt helpless. Then I found out about the #100000voices campaign to get the decision debated in Parliament. Last year only 29 GIST patients in the UK were actually administered Regorafenib so it’s very easy to feel isolated with such a rare condition that hardly anyone has ever heard of. When I discovered that there were other GIST patients working together to raise awareness I got a real boost and couldn’t wait to get involved to do my bit for the cause.”
The #100000voices campaigners are working as a team and hundreds of friends and families of GIST patients have pooled resources and skills to promote the petition relentlessly. The deadline for signatures is 30 March and there are now just under 83,000 people already signed up. Laura has an online home on the website of fellow “GISTer” Jemma Peacock from West Sussex so people can find out more about Laura and GIST and also sign the petition direct from Jemma’s site. Laura is determined that they reach the target well before the deadline to avoid any more sleepless nights worrying about the future
“This whole campaign has just snowballed. Two weeks ago we had around 20,000 signed up and reaching 100,000 felt like a fairytale. Everyone was reassuring each other and working hard when suddenly it took off. We’ve had over 50,000 people sign in the last week and at peak times over 1000 people were adding their names every hour. We’ve had stars from the world of sport and entertainment helping us on social media by asking their followers to get involved and sending us messages of support. The camaraderie amongst the campaign team has given me a real lift and it feels great to be part of something so big. The first thing I check every morning are the numbers and I keep checking throughout each day too. We are so close to the 100,000 now and I’m hoping the good people of Yorkshire will play their part in getting us over the line. I’ve always been a girl with big dreams & I’m fulfilling one of them this August when Christopher and I are getting married. My biggest dream moving forward is that I’m able to live long enough to see Amber as an independent adult. Every person adding their voice to the #100000voices petition makes that dream one step closer to reality.”