Hine - Looking at the stars: how incurable illness taught one boy everything

Published by Lagom
An imprint of Bonnier Publishing
3.08, The Plaza,
535 Kings Road,
Chelsea Harbour,
London, SW10 0SZ

www.bonnierpublishing.com

Hardback ISBN 9781911600770
eBook ISBN 9781911600800

All rights reserved. No part of the publication may be reproduced, stored in a retrieval system, transmitted or circulated in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without prior permission in writing of the publisher.

A CIP catalogue of this book is available from the British Library.

Designed by Envy Design

Copyright Lewis Hine 2018

Lewis Hine has asserted his moral right to be identified as the author of this Work in accordance with the Copyright, Designs and Patents Act 1988.

Every reasonable effort has been made to trace copyright holders of material reproduced in this book, but if any have been inadvertently overlooked the publishers would be glad to hear from them.

The author and publisher shall have no liability or responsibility to any person or entity regarding any loss, damage or injury incurred, or alleged to have incurred, directly or indirectly, by the information contained in this book.

I would like to dedicate this book to all the doctors,
nurses and healthcare professionals who have saved
my life and supported me over the past 17 years

I love what Lewis has done with his life, its so inspiring to hear. Giving him his Radio 1 Teen Hero award on stage at Wembley made me very proud, and hearing how loud the crowd screamed just showed what people thought of the amazing work hes doing. I saw first-hand the incredible things he is creating with Friend Finder when we worked on the prom together. Lewis is changing peoples lives and hes a true teen hero.
NICK GRIMSHAW

To be comfortable in your skin was the biggest topic for me because Im somebody whos always judged just by how I look. Lewis is showing the world its OK to be different and that disabilities and personalities make the world colourful. Lewis said Im his hero, well, hes mine. He is so young and going through so much just to stay alive and yet he gives his everything to help others and make a positive impact in the world. Keep fighting Lew.
KID INK

To me, in this day and age when we have so much bad news, its so wonderful to see someone so young doing something so brave and so wonderful. It teaches us all a lesson. Its just really inspirational.
ELTON JOHN

Lewis continues to do incredible things in his life and constantly proves that one person can make all the difference in other peoples lives, and for that I (and everyone else) am forever grateful.
KSI

Lewis is a true inspiration for us all to remember to never give up on our hopes and dreams stay positive and keep fighting! I feel very honoured to support Lewis with this book that also raises awareness of epilepsy.
JENNIE JACQUES
(QUEEN JUDITH IN VIKINGS)

M Y NAMES LEWIS, LEWIS HINE. Im 17. I spend a lot of time sitting in my room playing Xbox games and watching films, and I cant leave the house without a responsible adult. Usually my mum.

I live just outside Portsmouth in a place called Leigh Park. Its the biggest council estate in the UK and, if you Google it, it comes up as one of the worst places to live in the whole of England.

Not long ago, my little sister Jessica and I were walking back from the Co-op when she nudged my arm.

Hey Lewis, look at that, she said.

I turned. This bunch of little kids was coming towards us holding a plank of wood between them. They could only have been about eight years old, but the plank they were waving at us had nails sticking out of it.

Hey! they shouted at us. Hey, you!

Then they started coming towards us.

Were in trouble, I said to Jess.

We were only about 15 metres from home but the thing is, I cant run. Ive got epilepsy and every time I have a seizure my muscles get weaker. I have a lot of seizures anything between 30 and 50 a week is normal, so theres no strength left in my legs. Half the time Im in a wheelchair.

Dont worry, Jess told me, grabbing my hand.

She pulled me over the road and we made it across just before a white van drove past. That stopped the kids and gave us time to duck into our local corner shop. We went down the back aisle where all the cleaning stuff is and hovered about until we were sure the kids were gone. The bloke who runs the shop probably thought we were nicking something. Theres a lot of shoplifting around here and there had been a nasty incident once when hed suspected me. Id gone in to buy some chocolate and when I picked the bar up, my hand clamped thats an epilepsy thing too so I had to balance it against my body. I was just trying to make sure that I didnt drop it, but the shop owner assumed I was trying to put the bar in my pocket. There are a lot of misunderstandings when youre disabled.

And although I dont look disabled unless Im in my wheelchair, I am. All in all Ive had 13 life-saving brain surgeries so far, which means that my brain looks like Swiss cheese. All sorts of stuff has fallen through the holes, like my memory trigger and whatever it is that tells you when you need to wee. The epilepsy started when I was six, but I was diagnosed with a brain tumour and hydrocephalus, or water on the brain, when I was 17 months old. The surgeons managed to remove the tumour, but they couldnt cure the hydrocephalus. Theyve put a kind of tap in my skull for that; they call it a shunt.

I go to the local college. Im still doing maths and English because I failed my GSCEs, and Im also doing a foundation learning course that includes a module called horticulture. Thats gardening, basically. I hate gardening but the only other option was sports and, as youve probably guessed, sport isnt exactly my strong point. Its only a one-year course and I dont know if Ill pass anyway. It doesnt matter though, because I dont go to college for the education. I go because thats what normal kids do and so much of my life is not normal that I really enjoy the bits that are. Even if it means having to pretend to be massively into plants.

So college is OK and I actually like living in Leigh Park. Despite the odd wild kid, our neighbours are nice. People look out for each other. Its been home to me, Jess, my older sister Chloe, my mum Emma and our two dogs, George and Poppy, since I was a baby. Poppys a Yorkshire Terrier and so is George officially, but we suspect he might actually be half wolf. He doesnt bark he howls.