by Lewis Hine
We tried car-washing too, and a neighbour called Julia offered to do a day’s face-painting. She did the painting and I sat next to her in my wheelchair with my little bucket and a bunch of Friend Finder posters. We were there from 9am until 4pm, but by the end we’d only raised £70. At that rate, it was going to take us 215 days to raise our target; we only had about 100 left until prom day.
I knew we needed help. I contacted the leader of Portsmouth City Council and asked if we could meet – after all, I reasoned, Friend Finder was providing a service for disabled children in the area, and the council would surely want to support that? I went with my sister Jess and was just really honest; I said that we had this great plan for a prom, but that we were literally on the edge with no money, despite our fundraising efforts. The councillor made a one-off donation of £1,000 there and then. That was a huge help – not simply because it was a large injection of much-needed cash, but also because it made our GoFundMe page look better; people are reluctant to donate to a cause that hasn’t secured any funding.
Portsmouth City Council also gave us a space to use as Prom HQ (it was the lower ground floor of the multi-storey carpark, but what it lacked in glamour it made up for in convenience – it was opposite the Guildhall), offered to pay for the red carpet and gave us the square outside the Guildhall free of charge. It’s not easy admitting that you need help, but I’m so glad I did – their support changed everything.
I was determined to have a red carpet and to give everyone their moment of fame as they arrived at the Guildhall. My original plan had been to have it leading up the steps outside while spotlights arced across the sky in true film premiere style, but once we’d measured it all out, we discovered a hitch: an outdoor red carpet’s meant to be attached via some holes in the steps, but they’d been accidentally filled in and we would have to pay to have them drilled out again. So the carpet went inside.
That wasn’t the only compromise. I knew that how you arrive at prom is almost as big a deal as what you wear, and I had this idea of hiring a fleet of supercars (I’m a massive supercar fan), which would be parked outside the Guildhall so that everyone coming would have a chance to sit in one and have their photograph taken. The council agreed, but in the end there was simply too much for our small, inexperienced team to do; the reality was that if the prom was going to happen at all, we needed to concentrate on the basics.
Like music. We really wanted a live band and had this wish list of A-listers – Ed Sheeran, Adele, The Vamps, Matt Terry – written on the wall at the office. Of course, we had no idea how to go about finding a band, let alone a super-famous one, so I decided to ask someone who did. I still had Nick Grimshaw’s number in my phone from the Teen Awards and, after a lot of fretting and some encouragement from Mum, I wrote him the following message on WhatsApp:
‘Hey Nick, do you remember me? It’s Lewis from the Teen Awards. I need some advice on the planning of the massive prom I’m organising. Thanks from Lewis.’
I sat on the sofa with Mum while she willed me to send it.
‘Are you really going to do it? Go on, you press it,’ she said.
‘Here we go.’ I hit send and looked up at my mum. ‘Done.’
We stared at the screen together. ‘Oh my God, it’s got two ticks, it’s actually arrived,’ she said.
‘Crazy! What am I doing?’
‘I can’t believe you’ve just texted Nick Grimshaw asking him for help,’ said Mum, giggling. ‘OK. If he doesn’t reply, don’t worry. People must ask him for help all the time, so let’s not get too excited.’
I sat there for a serious moment, thinking. Then: ‘Hey, yeah!’ I said, throwing my arms up in the air. We lay back on the sofa and laughed.
I was convinced Nick wouldn’t even remember who I was. He must meet hundreds of new people every month.
But he did remember. A few hours later I was in the kitchen with Jess when a text came in. It said, ‘Hey Lewis, great to hear from you. That sounds fun. Why don’t you come to Radio 1 one day and meet us and chat through some ideas?’
I couldn’t believe it. A few days later I was sitting in a big swivelly chair at the Radio 1 studio telling Nick Grimshaw all about our plans. He was incredibly enthusiastic – although he did point out that major pop stars’ diaries are ‘insane… actually they work like dogs, they literally work every single day!’ So the chances of getting Ed Sheeran or The Vamps to play at a prom in Portsmouth were quite slim.
When he saw that I was disappointed, he said, ‘The night needs to focus on the people going there and the reason why they’re going. They’re going to experience the prom they missed out on – you don’t want people asking for tickets so they can see a star perform.’
It was probably the best advice anyone gave me.
Nick offered to help us find an up-and-coming band, and suggested that we ask people coming into Radio 1 in the weeks leading up to the prom to record a message of support that we could broadcast on the night. The roll-call of celebrities walking through those doors is impressive, and before we knew what had happened, we’d had shout-outs from the likes of Olly Murs, Emeli Sandé, Rita Ora, Clean Bandit, Niall Horan, Jess Glynne, KSI, Louisa Johnson, Two Door Cinema Club and even The Vamps. And we also had the very brilliant indie singer Jerry Williams lined up to play. She’s from Portsmouth, too, which was good.
We also needed clothes. I didn’t want money to be a barrier at my prom, so everything was going to be free. That meant we needed enough dresses and suits and pairs of shoes for everyone – with spares so there was a choice of styles and sizes. Jasmine put a post on Facebook asking for anyone with an old prom dress to get in touch. It was shared over 300 times and suddenly Prom HQ began to disappear under a mountain of silk, sequins and tulle. It was exciting – until we discovered that every dress needed cleaning and that we didn’t have any clothes rails to hang them on. I remember we had one meeting where we couldn’t see the floor for dresses, so everyone decided to put one on – even the film crew. (I’d like to make it clear that this didn’t include me; the girls tried, but I wasn’t having any of it.)
And we needed guests: 150 of them, plus a carer each. (The room could hold 350 but we capped it at 300 to make room for all the wheelchairs. We wanted to make sure that anyone in a wheelchair was properly included – there’s no point in saying, ‘Yes, you can come to prom in your wheelchair, but you won’t be able to move from the table.’) Anyone who had missed their own school prom could apply, but we also had requests from three 13 year olds with terminal illnesses who knew they wouldn’t live to 16. That was a shock.
I’m always moved by the stories I hear through Friend Finder. No matter how tough you’ve had it yourself, there is always someone facing a harder battle. Take the epileptic boy who applied: his seizures are so bad and so frequent that he hadn’t been allowed to go to his school prom, and when his mum wrote to us, she wasn’t hopeful that we’d say yes either. I told her that we would find a way. And we did. We tracked down a folding screen so that every time he had a seizure, his mum could put the screen up to give them some privacy until it had passed.
If you think getting dressed up in fancy clothes and having a dance doesn’t sound important, then that’s because you’ve never had to sit at home on your own while your friends party, or lie strapped to a monitor in a hospital bed while your classmates head off for a night out. People assume that I arranged a prom because I’d missed my own, but that’s not the case – when I first started planning the Friend Finder Prom I thought I was going to mine. I arranged a prom because they’re fun – and being disabled should never be a barrier to that.
The work I was doing with Friend Finder and the prom was making me more and more aware that being disabled shouldn’t be a barrier to anything, and that people like me could do anything our non-disabled peers could do. I decided that I would mark my sixteenth birthday by making a video saying exactly that.
My Top Tips for Life
When you’ve got a goal, ma
ke a plan. I started planning the prom in total chaos and I was so disorganised that it could have very easily fallen apart. Start by making a list of what you need to do and a timeline of when you need to do it. Then put it on the wall. It will help you stay focused and not get distracted.
Never be afraid to ask for help – it’s not a sign of weakness, it’s how you learn.
At the end of each day, make a small note in your diary or notebook of what you have achieved that day, and also a list of what you need to do tomorrow.
Always take time to acknowledge your successes and everything you’ve achieved so far, but don’t let that moment of success distract you from the end goal – because that’s where you’re heading. A high point is just a service station where you refuel along the way.
GOING VIRAL
ON 17TH MARCH 2017 I posted the following message on Facebook:
‘Today is my sixteenth birthday. Please help me celebrate by watching and sharing my video to raise awareness. Thank you from Lewis.’
The video itself lasted for one minute 42 seconds. This is what I said:
‘My name is Lewis Hine. I was born in 2001. At 17 months old, I was diagnosed with a brain tumour and it changed my life forever. I have had 13 brain surgeries to stay alive. I also have drug-resistant epilepsy and hydrocephalus and I have seizures most days. My life is a challenge. But one I am willing to accept. People say I’m disabled as if it is a bad thing, but I say I’m lucky. I know what my challenges are. I never take anything for granted, I don’t feel sorry for myself, I use coping mechanisms to help me. In fact, I founded a project, Friend Finder, to help children who miss a lot of school come together to make friends. My project Friend Finder has now helped hundreds of children make friends. Disability isn’t a bad thing, BUT keeping silent about it is! Today is my sixteenth birthday and I would like you to help me celebrate by sharing this video to show to the world that it’s OK to be different. My illness may define the length of my life, but it won’t define how I live it. My disability gave me the ability to understand and help others. And now I finally feel like I am living.’
I had no expectations when I pressed share, and I certainly didn’t plan to make a viral video; I simply wanted to mark my birthday in a way that felt honest. But when I woke up the next morning, I discovered that it had been viewed over a million times. Messages were coming in from all over the world. There were tens of thousands of them and most were thanking me for bringing the problem of isolation to the world’s attention.
There were messages like these from parents:
‘Wow! My daughter is about to turn eight. She has battled a brain tumour since she was eight months old. I am so pleased to see your positivity and light. I will tell her about you.’
‘Happy birthday! My five-year-old son has intractable epilepsy too, Dravet syndrome. He misses a lot of school and your programme will be so great for him when he gets a little older. Thank you for sharing!’
‘I cannot wait to show this to my son, who is 13 and faces his own challenges... I hope it will help to teach him to appreciate and be grateful for everything that we have. That ability (to be grateful and see the glass as half full!) is a huge, invaluable gift. Thank you for sharing it with all of us!’
‘Love this. My son misses a lot of school due to having Noonan syndrome, always has. He has always struggled with making friends and developing those friendships for various reasons, ie bullying and attendance at school. “Friend Finder” is a fabulous idea. Happy Birthday Lewis!’
I had messages from other disabled young people too. Those really hit home. There was a girl in Pakistan, for example, with cerebral palsy. She wrote that before she saw my video, she’d pretty much come to the point where she wanted to end her life, because it was so difficult having an illness like that in her culture. The video, she said, had made her realise that she wasn’t alone after all, and that gave her the strength and belief to go on. I found that really inspiring. She’s stayed in touch through Friend Finder and I heard recently that she’s started running quiz groups for other disabled kids in her area. She loves it, apparently, and it’s helping her to say positive.
Discovering 50,000 messages in your inbox is a lot for a 16-year-old kid to deal with – especially one who struggles with his reading. I’m not going to lie, my first reaction was to stay in my room and hope it would all go away. But once I’d calmed down, I realised that these messages proved that I wasn’t alone, and that there’s a definite need for Friend Finder.
The message that has stayed with me most was from a little boy with a brain tumour. He was only four or five and he called his tumour his ‘naughty bean’. He said, ‘I’ve got a naughty bean in my head like you Lewis and I’m going to be big and strong like you. I’m not going to let my naughty bean get to me.’ It really made me laugh, and the next time I went into hospital I thought about what he’d said; it cheered me up just like my video had cheered him up. And that’s the thing, people think all the Friend Finder stuff is about me helping other people, but they help me just as much.
By 20th March the views had hit three million and I’d made the lead story on the BBC Hampshire News. ‘Teenager’s Facebook birthday video goes viral,’ ran the headline, next to a huge picture of me. If that was a surprise, what happened next was unbelievable.
Mum and I were just sitting chatting in the kitchen when the Friend Finder phone rang. (We don’t have an office but we do have a separate number for Friend Finder.) Mum picked it up.
‘Hello, I’m trying to get hold of Lewis Hine,’ a woman said. ‘I work for Elton John. He’s seen Lewis’s video and wants to talk to him. How do I make that happen?’
Mum pulled her amazed face at me. ‘Just tell Elton to ring my mobile,’ she told her, and gave out her number.
We sat there for five minutes, waiting. I assumed it was some kind of joke, but Mum wasn’t so sure.
But then her phone did ring. She gave it to me – and Elton John was at the other end.
‘Hello, Lewis,’ he said. ‘I watched your video. I was so moved by it and it made me feel so good about everything in life. I just wanted to tell you that I think you’re amazing. You’re doing something so special for people. You have no idea how inspiring you are. To me, in this day and age when we have so much bad news, it’s so wonderful to see someone so young doing something so brave and so wonderful. It teaches us all a lesson.’
I was so shocked to find myself on the phone to Elton John at all, let alone have him paying me compliments, that all I could manage to say was, ‘Just hearing that makes me feel so happy.’
‘You make me happy by doing something so beautiful and so brave and so wonderfully moving,’ he replied. ‘It’s just really inspirational to talk to you. I’ll be in touch by email.’
And he was.
Well, after that, things just went crazy. Mum came into my room at about 6am the next morning and woke me up with the words, ‘Lewis, we’ve got a living room full of people and big cameras. They want to speak to you.’
I just hid under the duvet.
‘You made the video!’ she reminded me, chuckling as I tried to get my head around it all.
‘I don’t know what to do,’ I told Mum. ‘I didn’t think it through!’
She literally dragged me out of bed, gave me a Friend Finder T-shirt to wear and pushed me into the sitting room. There must have been eight or nine people in there from the BBC, plus some people from Radio Solent. It’s not a very big room.
‘We want to interview you on BBC Breakfast,’ someone said.
I didn’t know what to think. Appearing on live telly sounded really scary, but on the other hand, it would mean millions more people would hear about Friend Finder.
We were miked up and told to sit on our sofa and wait for our cue. It was so early that Chloe and Jess were still in bed. The TV people kept saying, ‘Stand by, stand by.’ Mum and I had no idea what they were on about. Then at 7.08am one of them got a message. ‘No, hold fire. Martin
McGuinness has died – we’ve been pulled.’
Well, I was gutted. I’d spent the last hour psyching myself up to do a live TV interview and now it wasn’t happening because some Irish politician had died. Radio Solent went ahead with an interview, which was great, but it wasn’t BBC Breakfast.
I went back to bed and the next thing I knew, Mum was waking me up again. ‘We’re going to Manchester,’ she said. ‘The train’s in an hour.’
‘What?’ I asked, really confused.
‘The BBC called again,’ she told me, stuffing some clothes into a bag. ‘They want to interview you in the studio first thing tomorrow morning.’
Who knew that so many people watch BBC Breakfast? When I sat down on the famous studio sofa on 22nd March to talk about Friend Finder, we’d raised about £1,400 for the prom. By the time I was back in the lobby 15 minutes later, another £3,000 had come in and the video had reached 30 million views. It was unbelievable. I remember sitting in one of the funny green sofa booths they have there with Mum.
‘Emails and messages are coming in from complete strangers offering to help you out,’ she told me. ‘All these people are sending you such lovely messages. Facebook is going absolutely crazy. So many donations have come through… Do you think we’re actually going to get enough money to do the prom? I think this is going to be massive, Lew. How do you feel?’
I know I should have said, ‘Excited’ – after all, in the last six days I’d been on the telly, I’d had 50,000 messages of support and talked to Elton John – but I was finding it all a bit overwhelming, to be honest.