‘My teenage son has helped hundreds of sick and disabled children make friends’
After 13 operations on his brain and a lifetime spent in and out of hospital, Emma Hine’s son Lewis, now 17, knew just what it was like to be a lonely kid in hospital. Making friends is tough when you’re often out of school, and hospitals can seem like the most isolating of places.
Lewis was just 17 months old when he was diagnosed with a brain tumour, and has been battling illness ever since. He also suffers from fluid on the brain and drug-resistant epilepsy.
Sadly, there is no cure for him and he spends much of his time in hospital, facing daily seizures and crippling pain. Growing up, he missed a lot of school and struggled to make friends, and by the age of 13, it really started to get him down.
As single mum Emma, 41, explains: “As he got into his teenage years, it became a lot harder, because when you’re younger everyone needs support from their parents or siblings, but when you’re at secondary school you start to go out with your friends, which Lewis couldn’t do.
“He went through a phase where he was depressed. He used to say, “I wish there were two Lewis’s and I was the one that wasn’t ill.” It was very sad. He said, ‘I can’t be the only person who feels like this.’ And it turns out there are a lot!”
So, aged 14, Lewis organised a party for other sick kids in his local area. Having bagged a £300 grant from the O2 Think Big scheme, he posted about it on Facebook and hoped for the best.
“Lewis didn’t know how many people would come, but 20 kids turned up,” smiles Emma. “He ordered pizzas for them all! It was amazing.”
Word spread and Lewis planned more fun events, like wheelchair basketball and indoor skiing. But things really took off when he posted a video on Facebook for his 16th birthday to break the stereotypes around disability.
It prompted Lewis to start up Friend Finder, a charity that organises events for hundreds of sick and disabled youngsters so they can have fun and make friends.
With help from his sisters Chloe, 18, and Jessica, 15, Lewis uploaded a touching montage about his life, featuring photos of him in hospital since he was a baby.
During the clip, he bravely says: “People say I’m disabled as if it’s a bad thing, but I say I’m lucky. I know what my challenges are and I never take anything for granted. In fact, I started a project called Friend Finder that helps children who miss a lot of school to come together tomake friends. Disability isn’t a bad thing, but keeping silent about it is. My illness might define the length of my life, but it won’t define how I live it.”
The video went viral – to date it’s had 31 million views – and in just one day, Lewis’s inbox was filled with 50,000 emails from families saying how they needed Friend Finder.
“That’s when it hit home that Friend Finder needs to be something global,” says Emma. “Lewis says there is this whole forgotten empire of kids and doctors have said it’s opened their eyes to the impact treatment can have on children’s lives.”
As Lewis’s video hit the headlines, he made one very special fan, Sir Elton John, who called the teenager out of the blue to say how ‘proud’ he was.
“It was crazy,” laughs Emma. “Elton was in America and had seen the video on the news. He said he was so blown away that he had to reach out and say: ‘You have to keep doing it. What you’re doing is amazing.’ Lewis was chuffed to bits.”
Having captured the hearts of people across the world, thousands of pounds of donations flooded in, and that’s when Lewis set his sights on organising his first prom in June last year.
The teen had missed his own school prom during one of his countless stays at Great Ormond Street Hospital, so he decided to throw a mega party for hundreds of children who had also missed theirs through illness.
“It was the biggest thing he’s ever done,” says Emma. “But I think being in the hospital for so long makes you very aware of other people’s needs. He’s such a sweet kid and was three when he did his first fundraiser!
“I have a video of him being interviewed by the press in hospital saying he wants to help poorly children and do face-painting – and he did. Fundraising was talked about a lot on the ward, so he picked up on it and never let go.”
Face-painting is one thing and organising a prom is quite another – but Lewis rose to the challenge. Despite suffering from up to seven seizures a day and needing care 24/7, the inspiring teen, with help from one of his celebrity fans, Radio 1’s Nick Grimshaw, found the strength to organise the venue – the Portsmouth Guildhall – a candy-floss machine, 300 prom dresses and a star of the show, local singer-songwriter Jerry Williams.
“It was a massive undertaking and I can’t believe he pulled it off!” says Emma. “But he did, and the night was amazing. There were these incredible kids walking down the red carpet with breathing tubes, oxygen tanks and wheelchairs, and they were smiling and dancing as their mums cried with happiness.
“One mum said to me this was the first time her daughter felt like she belonged. It’s so much more than a prom. It’s about making friends and realising that you’re not alone.”
It may have been a happy night full of laughter, but Emma received a heartbreaking phone call just days afterwards from a mum who had lost her daughter – a tragic reminder of how fragile life can be.
The prom dresses Lewis had organised, so girls could feel like princesses on the night, were supposed to be returned, so they could be recycled for the following year. But when Emma picked up the phone that day, the tearful mum made a very special request.
“She asked if she could keep the dress, because sadly her daughter had passed away only days after the prom,” confides Emma. “She said it had been the best night of her life, and she wanted to bury her in the dress. It’s a really sad story, but it shows the importance of what Lewis is doing. He gave that young girl the best night to the point where she wanted to stay
in that dress forever – and that says it all. It’s all about seeing the children’s smiles.”
In many ways, Lewis is like any other teen. He loves Liverpool FC, playing FIFA on his Xbox and listening to music. But Emma confides that as his epilepsy worsens, she could lose her son at any moment.
“He has seizures through the night and doesn’t sleep a lot, so in the morning he is really hard to wake up,” she says. “Before I look at him, I take a deep breath because I’m terrified a seizure will take his life. If he’s having a bad day, he will shake because his muscles are weak, and feeding himself can be a challenge. He can’t ride a bike, walk any long distance, or write very well.
“There’s so much he can’t do. But, do you know what? He doesn’t let that bother him. He just focuses on what he can do. He always says that disabled people make the world colourful. He teaches us how to live.”
It’s this fighting spirit that drives Lewis to push through his own challenges to help other children. And recently, while in the midst of organising his second prom taking place this summer, he squeezed in time to give a poorly boy a special birthday surprise…
“It’s such a sweet story,” smiles Emma. “A mum had reached out on Friend Finder, as her son, Jude, had epilepsy like Lewis. He was turning 13 and didn’t have any friends to have a party with and asked if Lewis could send him a card. But Lewis said to me, ‘Mum, we have to go his house!’ So he had toys donated from a local shop and we turned up at his house to surprise him. Jude was blown away and said, “I’ve never met anyone who’s like me before. I am so happy,” and that sums it up – it was someone who got him. That’s why Lewis is so amazing.”
Read the full article online: https://www.mirror.co.uk/news/real-life-stories/my-teenage-son-helped-hundreds-12556600
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‘My teenage son has helped hundreds of sick and disabled children make friends’ - 25 May 2018
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