Golden Heart

Emma Johnson

Description

Paul and Emma Johnson's 8-year-old son, Max, was a normal, healthy, fun-loving child. December 8th, 2016, changed all that forever; he was rushed to hospital and it was found that he had an enlarged heart. Max was suffering from heart failure and diagnosed with a condition called dilated cardiomyopathy. His heart had become so large that it was no longer able to pump the blood around his body effectively. In the bleak medical terminology with which the Johnson family were to become all-too familiar over the coming days and months, they were told that their son had a 33 per cent chance of getting better, a 33 per cent chance of requiring a heart transplant and a 33 per cent chance of passing away. In what felt like the blink of an eye, their world was turned upside down. At the Freeman Hospital in Newcastle-upon-Tyne, Max was placed on the urgent list for a heart transplant. This book follows the ups, downs, twists and turns of this tumultuous journey, the pain of waiting for an organ, of seeing other children not make it, and The Mirror newspaper's 'Change the Law for Life' campaign - for which Max became the poster boy. It recounts how it felt to finally 'get the call'. The book also covers the relationship the Johnson family have built with Max's donor family, with whom they have developed a close bond. Two families from opposite ends of the country intertwined through tragedy and fate.

Sujets

• Médecine
• Cardiothoracic surgery

Informations

• Publié par: Austin Macauley Publishers
• Date de parution: 30 octobre 2019
• Nombre de lectures: 0
• EAN13: 9781528969895
• Langue: English
• Poids de l'ouvrage: 1 Mo

Extrait

Golden Heart
Emma Johnson and Paul Johnson
Austin Macauley Publishers
2019-10-30
Golden Heart About the Author About the Book Dedication Copyright Information © Acknowledgments Once upon a Dream Foreword Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 ‘Conclusion’ Golden Heart
About the Author

Paul Johnson was born and raised in Newcastle-under-Lyme and still works in Staffordshire as a civil servant. Emma Johnson was born in Withington and raised in Sale, South Manchester. She works as an export consultant in a market research capacity and speaks Japanese. Emma and Paul live in Winsford, Cheshire, with their two children, Harry and Max. Paul’s hobby is listening to vinyl on retro turntables and Emma enjoys performing in local musical theatre productions.
Paul and Emma have enjoyed writing their first book – a labour of love – and hope it will inspire readers to think about organ donation and to share their wishes with their family.
About the Book
Paul and Emma Johnson’s 8-year-old son, Max, was a normal, healthy, fun-loving child. December 8th, 2016, changed all that forever; he was rushed to hospital and it was found that he had an enlarged heart. Max was suffering from heart failure and diagnosed with a condition called dilated cardiomyopathy. His heart had become so large that it was no longer able to pump the blood around his body effectively.
In the bleak medical terminology with which the Johnson family were to become all-too familiar over the coming days and months, they were told that their son had a 33 per cent chance of getting better, a 33 per cent chance of requiring a heart transplant and a 33 per cent chance of passing away. In what felt like the blink of an eye, their world was turned upside down. At the Freeman Hospital in Newcastle-upon-Tyne, Max was placed on the urgent list for a heart transplant.
This book follows the ups, downs, twists and turns of this tumultuous journey, the pain of waiting for an organ, of seeing other children not make it, and  The Mirror  newspaper’s ‘Change the Law for Life’ campaign – for which Max became the poster boy. It recounts how it felt to finally ‘get the call’.
The book also covers the relationship the Johnson family have built with Max’s donor family, with whom they have developed a close bond. Two families from opposite ends of the country intertwined through tragedy and fate.
Dedication
We would like to dedicate this book to our elder son, Harry, for being such a loving and amazing brother to Max.
Copyright Information ©
Emma Johnson and Paul Johnson (2019)
The right of Emma Johnson and Paul Johnson to be identified as authors of this work has been asserted by them in accordance with section 77 and 78 of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publishers.
Any person who commits any unauthorised act in relation to this publication may be liable to criminal prosecution and civil claims for damages.
A CIP catalogue record for this title is available from the British Library.
ISBN 9781528969895 (ePub e-book)
www.austinmacauley.com
First Published (2019)
Austin Macauley Publishers Ltd
25 Canada Square
Canary Wharf
London
E14 5LQ

This book is in support of the following charities:
The Sick Children’s Trust

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The Children’s Heart Unit Fund

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InspiredbyKeira

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Acknowledgments
Many thanks to Emma’s brother, Marcus Taylor, for the book cover photograph and other photographs featured in this book.
Many thanks to Willow Tree for the Heart of Gold figurine featured on the front cover.
Many thanks to everyone at the Mirror Newspaper Group, especially reporter Jeremy Armstrong for his professionalism, integrity and friendship.
Once upon a Dream
"Once upon a dream, I saw it through the steam
A castle! It was such a frightening scene
Of course I saw it, I had to explore it!
I heard weird clangings and also some bangings
I stepped through the door and this is what I saw…
Rocks flying through the air, all I can do is stare
I knew that sight which gave me a fright
It was caused by demons crying and flying
The air was as heavy as water and around the corner, I saw a boy
He was just exploring too
Together, we walked and together we talked
We walked through the gloom until we saw a tomb
It was so scary
All of a sudden, a massive bang
We sang as we ran to explore and this is the next thing I saw…
A huge hole in the wall
It made us feel so small
In the distance a dragon breathing fire, flying higher and higher"
Max Johnson, aged 9, Newcastle Bridges School – written whilst a patient at the Freeman Hospital, Newcastle-upon-Tyne

Max as a baby Max transformed by his heart transplant Photo Credit: Credit:
Marcus Taylor Andy Commins/Mirror Newspaper Group
Foreword
Max Johnson’s story is one defined by love. It shines through every page of ‘Golden Heart’. There is the love of his parents, Paul and Emma, and his brother Harry. It is steadfast throughout the ordeal of Max’s illness, described in compelling detail here, and the seven-month wait for his heart transplant. There is the love of life itself that Max maintained despite the long days, weeks and months trapped on his hospital ward. There is the love, dedication and professionalism of the NHS staff who cared for him. Finally, there is the selfless love of his donor family, the complete strangers who saved his life.
There are many unforgettable elements to this most extraordinary story. Surely, none is more remarkable than the role played by Joe Ball. The devoted dad of four faced the decision to donate his nine-year-old daughter’s organs alone. His wife, Loanna, and son, Bradley, had been seriously injured in the car accident which so cruelly claimed nine-year-old Keira’s life in July, 2017. He recalled Keira’s love of nature, of the animals on her Grandparents’ farm in Devon. It was there for ‘all God’s creatures’, from the tiniest insect to her beloved pony, Trojan. It meant Joe knew exactly what his daughter would have wanted; to save and transform lives through organ donation. Her heart was given to Max in a nine-hour operation, filmed for the BBC in a remarkable TV first. Keira donated to three others, including another little boy; her name lives on in the charity ‘InspiredbyKeira’, set up to help bereaved families, families with sick children and to promote organ donation.
There is raw emotion throughout this book, especially for parents. Joe and Loanna’s first encounter with Max, listening to their daughter’s heart beating in his chest, is a triumph of the human spirit which defies mere words, and one which will stay with you forever. They are inspirational, as are so many of the key players in ‘Golden Heart’.
None more so than little Max himself. Who else has his life story told at the grand old age of 11? When we first met, back in June of 2017, he was facing a desperate struggle just to survive. My newspaper, the Daily Mirror, had launched a campaign to change the law on organ donation two years earlier. The idea was simple. Around 80 per cent of the population voiced their support for donation when polled. But little more than a third bothered to carry a donor card. A new law – called ‘opt out’ – would mean everyone would be considered to be an organ donor unless they stated otherwise. It would still be a gift of life.
Emma and Paul had agreed for Max’s story to be told to help our campaign. We were put in touch by The Sick Children’s Trust, the charity which enabled them to stay at the Freeman Hospital in Newcastle through accommodation which they provide with the help of public donations.
I met Emma in the hospital café close to Max’s ward, surrounded by tired doctors, worried loved ones and patients still in their dressing gowns. The pressure of the seven months since Max fell ill with an enlarged heart, its devastating impact, was hard to comprehend. December 6, 2016, was the date he was again taken to his GP. Devastating diagnosis of cardiomyopathy came within days, turning family life ‘upside down’. Cold hard statistics quickly followed; 33 per cent of patients get better, 33 per cent need a heart transplant, 33 per cent do not make it. Max’s heart was now so big that it was pushing his sternum forward and out of shape. An X-ray revealed it was the size of a rugby ball in his chest cavity. It was a vivid illustration of how badly he needed a new one. The tears flowed as Emma described the ‘roller coaster’ months of emotional turmoil they had endured.

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Max with Jeremy Armstrong
Photo Credit: Andy Commins/Mirror Newspaper Group
I met Max for the first time in the play area of the children’s heart unit at the Freeman shortly afterwards. Mirror photographer Andy Commins captured Max as he relayed his message to the Prime Minister, Theresa May, on the need for a new organ donation law. “I would say to her, ‘Please do that straight away’,” he declared. “I would say, ‘Thank you so much, Prime Minister, because that would be a really nice thing to do – not just for me, but for other children.’”
Throughout his ordeal – and it is one which many adults would struggle to bear – Max thought of others. Even in his darkest hour of need, he was asking for help not just for him but for the other kids on his ward, and all the other children in his position. When his transplant finally arrived, he thought of the donor and their family, and told me after the operation: “There are no words. I cannot thank them enough. They have saved my life.”
As he recovered, Max was again thinking of those who had not been so lucky. Surgeon Asif Hasan was seen in the BBC TV documentary battling to stem the flow of blood after his scalpel ‘nic