We put Max in public eye to change law... and find him a heart donor
Making their boy face of campaign was so tough
MAX Johnson became the symbol of the Mirror’s Change the Law for Life campaign – and helped bring in new organ donation legislation in England.
It is named Max and Keira’s Law in honour of Max, 11, and Keira Ball, the kind, loving nine-year-old whose heart now beats inside his chest.
In a second exclusive extract from his parents’ new book Golden Heart, Emma and Paul Johnson explain why they joined the vital campaign:
E pored over photos of Max for the Mirror campaign to Change the Law for Life and one stood out. It captured Max’s broken body against the expression of hope in adversity, with that half-smile.
If any image was going to have a significant impact, this was the one.
We still asked ourselves why we were allowing Max into the public eye. There were two main reasons.
We agreed the law should change, so if you didn’t “opt in” or “opt out”, organ donation consent would be “deemed”. We felt [this] could increase the consent rate and reduce the wait for anybody needing a transplant.
What clinched the decision? Max gave his blessing to share this, oh so personal, photograph. He understood it could help him and others. We also knew what it felt to have a loved one “deteriorating” on “death row”.
It was torture. If there was anything we could do to reduce this stress for others, we were prepared to chip in.
The other big reason was selfish. We felt Max’s story might just strike a chord with a family and result in Max getting that precious gift. We would do anything, if there was the slightest chance Max would be saved.
Little did we realise how Max’s story and the Mirror campaign to Change the Law for Life would snowball. Max would appear on the front of the Mirror some 15
Wtimes over coming months. The government started to listen. The Mirror also set up a public petition. In July 2017 Emma attended Parliament with Max’s brother Harry as MPs discussed the law change. She described it as surreal. It was difficult to comprehend the little boy being referred to was her little boy. Shortly afterwards, Geoffrey Robinson presented the first reading of the Organ
Max and Emma at a public event Donation Deemed Consent Bill. Weeks later, Emma was invited to the Labour Party Conference to speak at a fringe event which was promoting the Mirror’s campaign.
Within weeks, Max and Emma were invited to the 50th anniversary celebration of the first heart transplant in South Africa.
Max delivered a PowerPoint presentation with aplomb. In later interviews for BBC North West Tonight, he was asked how it feels to have a law named after him. He said: “It’d be nice if the law could be called ‘Max and Keira’s Law.’”
On October 29 last year we stood waiting to join the red carpet which led to the Pride of Britain awards. Max had won the Child of Courage category.
Later, across the room at the Grosvenor House Hotel in London, we noticed Keira’s parents – Joe and Loanna Ball. Max and Joe jogged on a collision course and engaged in a massive hug. They have such an amazing bond. Max would not be here without the Ball family, so how lovely to have them with us.
Max’s speech acknowledged Joe and Loanna. They received a standing ovation for being the heroes they are. ■ Golden Heart, adapted by Jeremy Armstrong; in support of Sick Children’s Trust, the Children’s Heart Unit Foundation and Inspired by Keira. RRP £17.99 in paperback, RRP £3.50 in ebook. See austinmacauley.com/ book/golden-heart for 30% discount; also at Amazon and Waterstones.