‘Sir Elton John said that I inspired him by trying to make a difference in the lives of disabled people’
Since his 16th birthday Facebook video went viral, Lewis Hine has given hope to thousands of other teenagers with serious health complications. By Hannah Stephenson
Lewis Hine is no ordinary 17-year-old. Diagnosed with a brain tumour at 17 months old, he wasn’t expected to live. He’s defied the odds, but has endured 13 brain surgeries to date and is living with a form of drug-resistant epilepsy, which causes him to have at least five seizures a day.
Despite all this, Lewis has become an internet sensation. A Facebook video he posted on his 16th birthday, talking about his life so far, went viral, attracting 30 million views.
He’s gone on to spearhead a charity for disabled youngsters, was named Radio 1’s Teen Hero of the Year in 2016 (which saw him invited to Kensington Palace to meet the Duke and Duchess of Cambridge), has chatted to Sir Elton John and been invited to a reception to mark the Prince of Wales’ 70th birthday later this year.
Now, Lewis has brought out his memoir, Looking At The Stars, but he still seems a little baffled about how much his life has changed in the last 18 months.
“My life is nothing like I imagined it would be. It’s a bit of a crazy life to be living,” he admits, laughing. “Up until the Facebook thing, I was just a normal 16-year-old. When I posted the video, all I expected were a few views from people who had already followed me at that point, not for it to go global.”
He explains how his “illness may define the length of my life, but it won’t define how I live it. And now I finally feel like I am living.”
His family — mum Emma and sisters Jessica and Chloe — have been a tremendous support and are clearly delighted that his story has culminated in a book.
“It feels really weird having a book out,” Lewis confesses. “It’s a way to get my story out there to people about what my life’s like and how I’ve dealt with my condition in the past 17 years.”
And his condition does impact his life in a number of ways. He can’t ride a bike, or swim, uses a wheelchair some of the time, depending on his energy levels, and can never be left on his own. On a bad day, he’ll need help getting dressed and eating.
At night, various heart and movement monitors in his room alert his mum Emma to seizures (she’ll have to get up to see him at least three times a night).
A few years ago, Lewis was being bullied at school and, isolated and depressed, spent much of life between his bed at home in Portsmouth and his bed in hospital.
“Throughout the five years at secondary school, I didn’t have many people to talk to, which was the hardest thing,” he recalls.
Facebook posts from other pupils hit him hard. He read one which said he should have been sent to Auschwitz, another that he should kill himself and save the NHS some money. His mother ended up going to the police and the social media abuse stopped, although the bullying at school continued.
But Lewis is a determined teenager. At 14, he set up Friend Finder to raise money to organise a party for other children and teenagers like him, who had missed a lot of school through illness, or disability, and needed a way to help them make friends.
Initially, progress was slow, he recalls. However, meeting American rapper Kid Ink backstage at a gig in Southampton — after his mum tweeted a picture of Lewis in Kid Ink’s clothing range, cap- tioned “12 brain surgeries, a lot of pain. What makes Lewis happy? Kid Ink”, which the rapper saw and retweeted — fuelled him to do more.
“Kid Ink was the support platform for me and will help me out with anything,” he says.
He went on to organise a glitzy prom for other teenagers who’d missed a lot of school through similar circumstances and, as well as scooping the Radio 1 Teen Hero Award, had a CBBC documentary made about him (he’s remained pals with Nick Grimshaw, who’s helped promote the book and Lewis’s Friend Finder Official fundraising events). Even Sir Elton John rang him after watching his video.
“He said he was really inspired and happy to see there was someone out there trying to make a difference in people’s lives and trying to make it easier for people with disabilities,” the teenager remembers.
But there are still lots of dayto-day challenges and Lewis re- veals that his seizures are getting worse. He’s been in and out of hospital since he was a toddler and never gets a proper night’s sleep as the seizures frequently happen at night, which impacts on the whole family. They’ve been told that Lewis is at high risk of sudden unexpected death in epilepsy, too.
“I have good days and bad days. Some days I will get up and out of bed easily, other days I won’t want to get up. But this is just what I’m going to have to live with. I don’t know how I cope with it — I just get on with things and be the best that I can be on a day-to-day basis.”
In February, Lewis was diagnosed with stage three renal failure, a result of the painkillers he’s been taking for his frequent blinding headaches. Doctors have changed his medication in the hope the kidneys will recover.
“That was a bit of a shock. When the doctors told me I had kidney failure, I told them if a brain tumour hadn’t knocked me off this earth, then kidney failure wasn’t going to, either.”
He’s now on a book tour, is hoping to set up two further
❝ When I posted the video all I expected were a few views, not for it to go global
Friend Finder Official proms and continues helping young disabled people to form friendships. Oh, and he also goes to college, when he’s well enough.
His mum Emma (41), who monitors how much he takes on and calls a halt if she feels it’s going to be too much, says he’s the happiest he’s ever been.
“Lewis loves helping people and would do it all day every day, but as his mum I have to look after him,” she says.
“If I think he’s not coping, I will pull him out of the situation. But all that’s happened has given him the energy to keep going. The support he’s received from everyone around the world has just given him an incredible life.
“Doctors have said he has a life-limiting illness. But Lewis is probably going to outlive us all. He’s so determined and has such a positive outlook, he’s taught us to live each day as if it were our last.
“Because of him, we don’t sweat the small things in our family. Our rule is, anything less than a brain tumour doesn’t count. Lewis has taught us to see the world in colour.”