“I don’t see the point in measuring life in time anymore.  I’d rather measure life in terms of making a difference”. These were the words of Stephen Sutton, a remarkable young man who channelled his incurable cancer diagnosis into an unstoppable effort to help others. Stephen’s Story captured the hearts of a nation and beyond.  Four years after his death in 2014, aged 19, the difference he made – and continues to make – is significant.

In 2009, at the age of 15, Stephen – a talented sportsman and student with aspirations of a medical career – was given the devastating news he had cancer. Teenage Cancer Trust supported him throughout his treatment – through our teenage cancer wards, of which there are 28 across the UK, and our specialist Teenage Cancer Trust nurses and youth-support programme.  

Then, in 2013, following the news that his cancer was incurable, he decided to make a bucket-list of things he wanted to achieve before he died. The list itself can’t fail to make you smile – it includes things like ‘hugging an animal bigger than me’ (he did, an elephant at West Midlands Safari Park whose calf went on to be called Sutton in his honour) and crowd surfing in a dinghy (also achieved!) -but number one on his list was ‘Raising £10,000 for Teenage Cancer Trust’. No-one could’ve predicted what this would go on to become.

His £10,000 goal was reached quickly, and the story of Stephen’s bucket list started to gain attention. Before we knew it, he’d reached a staggering £500,000. I remember calling him to express my astonishment and thanks to be told in no uncertain terms that it was “a good start” and that he now wanted to aim for £1million.  I was left in no doubt that this was a young man who believed anything was possible!

Then, on 22 April 2014 – in hospital having been told he was reaching the end of his life – he put his ‘final thumbs up’ on Facebook. Stephen’s thumbs up pose for photos was his unintentional trade mark – he did it all the time – and the message he posted was one of eloquence, positivity and emotion that belied his years and situation. He thanked his mum and family for all their support and asked all his followers to live life to the full. I still remember where I was when I saw it.  It stopped me in my tracks.

Within hours he went viral, his message sweeping the nation. Jason Manford, Jack Whitehall, Alan Davies, Coldplay, Chris O’Dowd, Sarah Millican, Bill Bailey and Robbie Williams were just a few of the famous faces that were inspired to post ‘#ThumbsUpForStephen’ photos urging fans to donate. Within 24 hours his updated target of £1 million was smashed and Stephen’s Story went on to raise an unbelievable £5.5 million, the most an individual has ever raised for Teenage Cancer Trust.

Stephen’s health rallied – albeit shortly – and this meant not only did he see his total reach over £3million and be told he’d been awarded and MBE but we could check what his wishes were for how we should use the funds he inspired. As ever Stephen was clear and to the point. We were told in no uncertain terms to “keep doing what you are doing”. So that’s what we did.

The £5.5 million he inspired has built and refurbed Teenage Cancer Trust wards in hospitals across the UK; trained teenage cancer nurses through Stephen Sutton Scholarships at Coventry University; funded health education sessions in schools; and brought young people with cancer together at Teenage Cancer Trust’s annual Find Your Sense of Tumour conference – an event Stephen himself credited with changing his perspective on life and cancer.

It’s easy to view his achievements as financial – and the £5.5 million we’ve been able to commit to spending has made an immeasurable difference to the lives of young people with cancer across the UK: but Stephen’s legacy is more than money.

He put young people with cancer – and Teenage Cancer Trust – in the headlines. He shone a bright light on both the issues young people with cancer face, and how Teenage Cancer Trust is the only UK charity providing the specialist nursing and emotional support that is so desperately needed by those young people. People don’t know young people get cancer and they don’t always appreciate how vital it is that young people have specialist support from Teenage Cancer Trust.  

Stephen undoubtedly changed the lives of thousands of people – he inspired them to fundraise, to think differently, to be positive in the face of challenges. He’s enabled the charity to continue to change the lives of young people with cancer by expanding our work and his legacy is being continued by his mum, Jane. An amazing woman that it is a privilege to know, Jane is a tireless supporter – completing marathons, climbing mountains and being a constant source of inspiration to so many, myself included. As anyone who meets Jane will tell you – she’s remarkable – determined, focussed and positive and it’s a pleasure to have her as part of the Teenage Cancer Trust family.

Stephen embodied aiming big – having an outrageous ambition, believing in the possible and stretching out of your comfort zone. Like Stephen’s, our ambition for young people is big. We believe every young person with cancer has the right to the best treatment, care and support; the right to be heard and not be ignored; the right to be a young person first and a cancer patient second; the right to live life to the full.

We’ve still got a way to go. We’re not yet able to reach every young person with cancer who needs us – but we know how to.  We desperately need more Teenage Cancer Trust nurses in hospitals across the UK. The main thing holding us back is the additional money to make this happen and it’s harder than ever to raise funds, but we’re driven to achieving our goals with the same unrelenting determination and positivity that Stephen embodied.

On a personal note, Stephen – and all the young people I’m lucky enough to meet through our work – make a huge difference to my perspective on life.  I turned 40 the year after Stephen died and never was it clearer to me that ageing is a privilege and that time is the ultimate gift. We need to grab life, live it and make the most of the time we have.  At Teenage Cancer Trust the young people we meet and support are the beating heart of why we do what we do – and that makes us impatient to achieve more and make the biggest difference possible to their lives as they face cancer.

You can donate to Stephen’s fundraising page here

To find out more about Teenage Cancer Trust, click here.