by Lewis Hine
12.40pm: It’s strange heading into Great Ormond Street. It’s totally familiar, of course, but I don’t come here for fun so it also brings back lots of memories of pain and nasty tests.
2pm: I’m getting ready to go into the MRI scanner. Today’s scan is a bit different: it’s called a ‘language brain scan’ and there’s hardly anywhere you can have one done, apparently. The doctor told me that people come from all over Europe to have one. It’s to try and help my epilepsy because my seizures are getting worse. I have to meet with a neuropsychologist first; she explains about the language games they’re going to do with me while I’m in the scanner, so they can see how the part of the brain that controls my speaking and listening reacts. She tells me the sorts of questions they’ll ask, but I don’t understand a lot of them. She says, ‘Answer the question with a verb,’ but I don’t know what a verb is. Then she says, ‘What do you think of when I say cat?’ I can’t think of anything, which makes me feel really stupid. Mum’s helping to explain – she says, ‘Say meow or stroke,’ but I just don’t get it. There are too many questions and the neuropsychologist is asking them too fast. I don’t like it.
4.30pm: I’m feeling pretty fed up. I was in the scanner for ages today and my back was hurting so much that I found it even harder to concentrate than usual. Mum’s doing her best to cheer me up but I really don’t feel like smiling.
5.30pm: We finally leave the hospital and Mum takes me straight to Starbucks for a treat. I have a hazelnut latte and a toastie.
7pm: We’re back at Waterloo and ready to go home. The train journey is only about 1 hour 20 minutes, but I’m really tired. I feel a bit guilty because I can just close my eyes and go to sleep in my wheelchair while poor Mum has to stand, but I don’t have any energy. The train is so packed that people are standing in the aisles and holding onto anything they can. It’s crazy.
9pm: Home! Mum’s helping me get ready for bed. I’m not sure why, but my body keeps shaking. I just tried to eat some noodles but my hand was wobbling so much that they kept falling off my fork, so Mum had to help. It’s horrible. I feel dizzy, too. Mum thinks it’s stress and since my head doesn’t hurt, she’s not going to take me to hospital. (If we went every time I was ill, we’d live there.) She gives me my meds and helps me into bed. I’m feeling pretty pants. I have to go back to Great Ormond Street in two weeks’ time for a whole week of tests. I know hospital is a necessary part of my life, but that doesn’t mean I have to like it. I don’t normally let hospital and my illness get me down but I’m tired tonight and not feeling too good. But I’m sure things will be better tomorrow.
OVER TO MUM
BEING A MUM is the best feeling in the world. Carrying a child for nine months, helping them to grow in a safe place inside you where you are able to protect them and keep them warm until they are ready to be born into the big wide world is an incredible experience. Once they take their first breath, they are vulnerable to everything, and from the day they are born they start their own journey – their own life.
I’ve had three children, and Lewis’s birth was the easiest. He was a dream child, smiling and laughing all the time. But at 17 months his life took a change of direction: when he was diagnosed with a brain tumour, it was devastating. I had spent the previous year and a half stopping him from bumping his head or scraping his knee and now, with no warning or time to adjust, I was having to hand my child over to a complete stranger, knowing he was going to remove part of his skull and cut into his brain.
The guilt you feel when your child is sick is overwhelming. I kept asking myself what I’d done wrong. Why was Lewis so poorly? Was it my fault? At that moment it took all my strength just to stand on my own two feet. How, I wondered, is any human being supposed to cope with a situation like this and not curl up in a ball and want to die?
I soon discovered how. You cope because you have to. Yes, you’re suffering the most horrific pain inside, but you have to be the strongest person on the outside to keep everyone else going. Lewis needed me to be strong for him, so I put my own fear and tears away and threw myself into being the best mum I could be, for him and my girls. I promised myself that I would give them the best life I could and that I would always support and be there for them, no matter what.
When Lewis came out of hospital two weeks later I was a nervous wreck. He looked like Frankenstein’s monster with a head covered in stitches and I held him as if he was made of glass, terrified I would break him. This was the start of 16 years of living under a constant cloud of fear and on a rollercoaster of uncertainty. I would wake each morning wondering whether today would be the day he didn’t come round from his seizure, or would crack his head open during a fall. Or perhaps it would be just another day of watching him struggle with normal life, smiling from ear to ear and completely determined to live the amazing life he wished he had. The fact that his life was so crap but he was always so happy regularly broke my heart, and there were days when I would lock myself in the bathroom and cry. I felt so guilty that my son had such a hard life. He was in constant pain and could only dream of doing what his sisters or other children did. Being a mum is amazing, but being the mum of a very poorly child is far more life-changing than normal parenting. With a healthy child, things get easier as they get older and start to look after themselves, but when your child has an illness, they don’t; things are hard every minute of every day.
When Lewis told me that he wanted to start fundraising for charity I almost couldn’t believe it. My first thought was, how can someone who goes without so much want to do things for others? But he did. The atmosphere at his first ever fundraiser, where he bowled against the world champion, was electric. Every person there was just having fun and feeling good in the knowledge that they were helping others. Lewis was only three years old, but he still gave a press interview to the local newspaper and television. He just thanked everyone for coming and said he was raising money for the poorly children and ASBAH, but it was amazing. He was the smallest person in the room that day, but he was by far the most powerful – a small youthful voice that captured everyone’s attention. I realised then that whatever Lewis lacked in physical ability, he certainly made up for in mental ability and understanding of others. It was obvious that he could make his voice heard and that there was something very special about him that made people want to help him.
He used that ability as he grew up. A bowling fundraiser turned into an army of superheroes running the Great South Run and many more events. He had raised over £20,000 for charity by the time he hit his teenage years. Supporting Lewis and his ideas hasn’t always been easy. Fundraising for a cause, organising events and now running his charity Friend Finder for him has been an incredible learning experience for the whole family.
As you’ll have read, Lewis’s story is not as simple as ‘Lewis was sick, then got better, did some fundraising and became a hero’. The truth is that his condition isn’t curable, and he spends a lot of his life either in his hospital bed at home feeling unwell, or actually in hospital. His shunt keeps him alive but if it blocks, or gets infected, then he’s in a life-or-death situation. As he was growing up, I had to learn how to spot the difference between a childhood illness and a blocked shunt. I knew that getting it wrong could make the difference between Lewis being alive or Lewis being dead. That’s quite a responsibility for someone with no medical experience. It was very stressful, but I soon discovered that a mother’s instinct is a real thing and that I could trust it. In fact, on a few occasions, that instinct saved Lewis’s life.
One day in 2009 the school called to say that Lewis had a headache and could I come and pick him up. This was nothing unusual, I had calls like that most days, but when I got there, Lewis was asleep on a bean bag in his quiet room. I put him in his wheelchair and took him home. Lewis said his head really hurt, so I lay him on the sofa and got him some painkillers and a glass of water. I wrapped his favourite blue Power Ranger blanket around him and waited to see if the painkillers worked,
but after 20 minutes the pain was worse. He said that he felt sick and couldn’t see properly. I knew it was his shunt. I called the hospital and they told me to bring him in straightaway.
When we got to hospital they gave Lewis a CT scan, and a registrar we’d never met before told me that the results showed the ventricles in his brain were OK, so they didn’t think his shunt was blocked. (Ventricles carry the water in the brain and usually swell when his shunt blocks.)
There was a swine flu epidemic at the time and every patient admitted into hospital was automatically tested for it. A blocked shunt has many of the same symptoms as swine flu and so, when Lewis’s scan came back clear, that’s what they assumed he had. He was immediately put into the side room on the neurological ward and kept in isolation. A few hours later, I was told that he was being transferred to a special swine flu ward and that’s when things started to go a bit crazy. I could see that his scan looked OK, but somehow I just knew that it wasn’t flu, it was his shunt. I also knew that if they moved him to the swine flu ward they’d be putting him in danger. He would probably catch it and, with his existing medical problems, that could kill him. I wasn’t prepared to take that chance so when they came to move him, I barricaded the two of us into the room and refused to let anyone in. One of the top hospital executives was called to the ward. He explained, through the shut door, that they had a new protocol in response to the outbreak and that it was very important that they moved Lewis to the containment ward. I suggested he come in to talk rather than shouting through the glass, but he refused. He was worried about getting infected. I knew Lewis didn’t have swine flu, so I told the executive that if he wanted to talk to me, he had to come in. Several minutes passed and then there was a knock on the door. I opened it to find both him and a ward nurse standing there, gowned up from head to toe with matching aprons and face masks. They looked pretty scary. I sat opposite them in my unprotected jeans and jumper and explained that until the test came back as positive for flu, I wanted them to listen to my concerns and stay open to the idea that Lewis’s shunt might be blocked. I didn’t want to cause trouble, but I could see Lewis was in terrible pain; I knew that if his shunt was blocked, his brain was being crushed, and while bureaucracy and drama were taking the focus away from his condition, he could be dying in front of me.
But they wouldn’t listen. They left the room and started to make arrangements to move him. So, when the nurses changed shift, I kidnapped my own son. I took him out of the hospital in his wheelchair and left a letter on the bed explaining why I’d done it. The letter also made it clear that I wasn’t going to bring Lewis back until the swine flu results were in and I could be sure that he would get the right treatment. What the hospital staff didn’t know was that we were just sitting outside in the car. I was so worried about Lewis that I didn’t want to leave the hospital grounds.
The ward nurses called me, but I told them that I wouldn’t bring him back until I knew they were going to make him better, not worse. Then they called my mum and my brother Mike to see if either of them knew where I was, and suddenly my phone was ringing non-stop with people looking for me. I was so scared. I had taken Lewis out of the hospital without telling anyone, he had cannulas in his hands and feet, he was in terrible pain but no one would help me and no one would listen. I knew I sounded like a mad person, but I also knew that it was his shunt that was the problem and I couldn’t give up.
Eventually the consultant called me and said that they had the results: Lewis did not have swine flu. Within minutes I was back on the ward and they put a bolt in Lewis’s head to measure the pressure in his brain. It was sky-high. Lewis was rushed into surgery to replace his shunt and save his life. As soon as he was safely in the operating theatre, I collapsed on the floor and cried. The fight and exhaustion had scared me forever.
Lewis’s life is a constant balance between life at home and in hospital; when he was 14, he really started to struggle with the feelings of isolation caused by all the time he’d spent away from school. When he came up with the idea for Friend Finder I was in awe of him. He put so much time and energy into the planning. His daily seizures and headaches would make most people feel sorry for themselves, but Lewis fought against all that and was constantly pushing forward to help more and more disabled children like him, so that they too could make friends and not experience the feelings of loneliness that he’d grown so used to.
There is so much that Lewis can’t do, but he still founded a national charity because he wasn’t afraid to ask for help. A lot of people find asking for help a sign of weakness or defeat, but in fact it’s a sign of strength. Lewis began to learn so much, and because he knows he has the memory of a goldfish, he asked me to document and take photographs of everything he was doing to help him remember.
When Lewis won the Radio 1 Teen Hero of the Year Award, I was so proud I thought my heart was going to burst. My daughters and I were in the audience watching. One of us had to walk to the stage with him, and I just assumed that it would be me. But as it got close to the time, I was so worried that I’d burst into tears of happiness and pride that I had to ask my eldest child Chloe if she’d take him instead. I didn’t want to upset Lewis seconds before he walked onto the stage at Wembley. Chloe agreed, but when his name was announced and I looked out from the audience, I could only see Lewis walking bravely and proudly on his own onto the stage in front of 10,000 people. When we all met up afterwards, Lewis said, ‘Well, that was embarrassing! By the time we got to the stage door Chloe was crying so much she couldn’t walk, so I left her there in a heap of tears being comforted by the stars from Made in Chelsea, and walked onto the stage by myself. I told Nick Grimshaw about it as we came off together, and he laughed, but what was even funnier was that when we walked around the corner, Chloe was still there in the same spot, and she was still crying! Nick gave Chloe a big hug and we all went off laughing. Next time I’m taking Jess!’
I guess that shows how proud we all are of Lewis. We see him fight every day to do the most basic things, like getting up in the morning and getting dressed; so to see what he has achieved over the past years makes us very emotional. The fact that he’s helped so many people at such a young age is amazing, but if they could see the reality of his daily life they’d realise that he is a true superhero. That’s why I was so proud when he was asked to write this book; it’s a chance for him to finally tell his inspiring story.
I have learned so much from Lewis’s humility and kindness towards people. His passion and drive inspire me when I’m feeling down. His fighting mentality and determination never to give up keep me going every single day. His disability gave him the ability to understand and help others, and it gave me the challenge of raising a family that sticks together through good times and bad: a family that faces adversity as a unit of strong human beings, helping others and living each day as if it were our last. Lewis may need a mechanical pump in his brain to keep him alive, require my constant supervision and have a massive impact on everything I can or can’t do, but when you’ve grown a real-life superhero in your tummy, you can’t help but watch in amazement and enjoy it with a massive smile on your face. I am so proud to be Lewis’s mum! Lewis was born to be different, not because of his illness or disability, but because of his big heart and passionate vision to make the world a better place.
AFTERWORD
I STILL CAN’T BELIEVE that I was asked to write a book. To be honest, revealing the details of your private life to the world is pretty scary, and embarrassing at times. There were occasions when Mum got upset when I was asking her questions about what happened when I was a baby, which was tough for me to see; looking through all the photos choosing what to use was difficult too – I couldn’t believe they were actually of me. But I’m hoping that by sharing my story I’ll help others, and if my book makes a difference to just one person then I’ll be happy. Making a difference to someone’s life is all I’ve ever wanted to do.
I’m more determined than ever to keep fig
hting and to achieve my goals. I want to make Friend Finder a global charity and make sure that every child suffering with an illness or disability anywhere in the world has at least one friend. I’m organising two more Friend Finder proms, but I want to do even more. There are children missing out on their school prom every year because they’re too unwell to get there, which means that I need to help them attend one and feel special every year. I want to take the proms global, too; hopefully, the prom in Mexico that I’m planning will be the first of many around the world.
I want to give 100 children across the UK an AV1 robot so that they can continue to access education from hospital or their beds at home, and still feel included. I’m going to approach the government to ask if they will recognise that a child is in school if the AV1 robot they’re operating is in their classroom. That recognition would have a really positive impact on the lives of children who, like me, are unable to go to school every day, and it will help schools too.
I want to work hard and achieve my goals so that hopefully, the Medtronic Foundation will invite me back to Hawaii, and I’ll be able to share how I used the award as an incredible platform to take my charity global. I know that, with hard work and determination, anything is possible.