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.
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.
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.
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8 reviews
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Anyone with organs should read this eloquent, persuasive and powerful account of one family's unexpected and rapid journey from normal family to anguished parents praying for their son's survival. There is hope, there is a tragedy but the outcome is intelligently, articulately and frankly led to with a thorough analysis of the pain and heartache it took to get Max and his family where they are today. Not only that but the law of England was ultimately affected. Please buy this to discover how and gain an insight into what it is like for the many people anxiously awaiting a donor and please consider opting in and perhaps save lives.
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I really enjoyed this book, which perfectly illustrates the roller coaster ride that comes with transplantation, and the ripple effects it has on the whole family and friends. A beautifully written insight into an extraordinary area of medicine that is both profoundly moving and heartbreaking. Congratulations to Emma and Paul Johnson, and to all their family, not forgetting the courageous ‘Max’.
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This is such an inspirational, well written and engaging book. When most families faced with this situation would just want to hide away, Paul and Emma bravely and selflessly tell their story in order to raise awareness of the importance of organ donation and to help others. This is a truly unique and remarkable story, told with dignity and without glamorising the situation, about how an ordinary family's lives were suddenly turned upside down. A powerful, emotional read.
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If you read only one life-changing book this year, make it this one. After you have discussed it with family, friends and colleagues you may not just change, but actually save hundreds of lives. This beautifully written book provides a detailed account of a shocking illness, dilated cardiomyopathy, that befell the 8-year-old Max. The story is written by his parents, Paul and Emma Johnson in narrative and weekly diary summaries. These include factual medical details laced with emotional impacts. We gain an insight into their domestic upheaval and reliance on the support of the wider family, friends, church, faith and charities to get through this dreadful long roller coaster period. We also learn much about and cannot fail to admire the amazing strength of character and humour unexpected in so young a seriously ill child. His understanding, behaviours and comments are often way beyond his age. Juggling work commitments, bringing up their other son, Harry, and of course being with Max in the hospital throughout, we feel the stress, sheer physical and mental exhaustion and yet the powerful love and hope driving the family towards an uncertain, but hopefully positive outcome. For Max, this meant the availability of a donor's heart and keeping him sufficiently healthy to be a recipient. For Paul and Emma it meant the guilty hope and horror that somewhere, for this to happen, another child must die. As if this were not enough for any family, the Johnsons took on a pivotal role in The Daily Mirror’s campaign for a change to an opt-out organ and tissue donor law. They also allowed a BBC film crew into their hospital life. Neither just for themselves, but in response to what they saw as other children sadly died awaiting rare, viable organs. After a successful heart transplant operation, the Johnsons describe their joy coupled with the terrifying responsibility of caring for Max following his hospital discharge. However the story does not end there as Emma and Max, when he grew stronger, was in demand as speakers on national platforms to help progress the donor law change campaign which had by this time reached Parliament. The organ donation process is normally anonymous, but the final chapter of this extraordinary story introduces the donor family and the beautiful nine-year-old donor Keira Ball, killed in a car crash. We read the highly charged emotional correspondence between the Johnson and Ball family and witness the creation of a rare bond - the coexistence of diametrically opposite emotions. For the Johnsons a picture of Keira and her happy heart, that life-saving gift. For the Balls in their tragedy, some degree of comfort that their child’s loss was not the end. This is a story of strength, resilience and emotion born out of a terrible illness. It also documents a great indebtedness to NHS medical skills and daily care and, of course, immense gratitude to donor families. Max and Keira’s story and their new law will continue to be a major contribution to organ donation in the UK.
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A true account of a nightmare journey, how a world can be turned upside down in a moment. Written with honesty, trust and respect. How an unselfish feed in a moment of tragedy can change someone’s life forever. Just about stopped crying have finished your book No words to describe how humbling, inspirational just don't seem enough to describe the strength your family have, how proud you must be of Harry, quietly supporting in the background, no hint of jealousy, though I bet Harry had his moments So I will just say. WELLDONE.
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What a wonderful but highly emotional book!
The message regarding organ donation is loud and clear and this family's courage has changed the way many people will address some heart-wrenching decisions in the future.
From a personal point of view, having spent significant time in the hospital with a child with a life-threatening illness, this has brought back many emotive memories. Many parents endure this trauma and can never speak about it.
Paul and Emma have shown such bravery in writing this book. They have portrayed highs and lows and also the positivity that can come from a negative situation showing hope and strength can come from despair and adversity.
Thank you for sharing this for the benefit of many.
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Emma and Paul were suddenly faced with the horror of the possibility of their young son, Max, dying from heart disease. Their book is beautifully written tracing the ups and downs of Max's progress over months on end, fervently hoping for a new heart, and then the results of the courage and kindness of the donor family. Max's delightful character shines through, with his bravery, humour and kindness to others.
This book, written with great love and compassion, will be of interest to many people, including those coping with heart-rending family crises. It demonstrates the dedication and professional expertise of NHS staff and may go some way towards helping more people to decide to become organ donors.
I found it compelling reading and didn't want to put it down!
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I was interesting in reading this book as my Mum has received a double lung transplant. This book was very emotional but amazing, I did not want to stop reading. Hopefully many more people read this book and more families can receive their precious gift of life. Thank you so much for sharing your journey and changing the law.
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