Max Johnson became the symbol of the Mirror’s Change the Law for Life campaign – and helped change the law on organ donation 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.
Here in the second exclusive extract from his parents Emma and Paul Johnson’s new book Golden Heart they explain why they joined the vital campaign:
We pored over photos of Max for the Mirror campaign to Change the Law for Life – but there was one that stood out.
It was a harrowing image which captured Max’s broken, failing and underweight body against the expression of hope and optimism in fighting adversity, with that half-smile and begging eyes.
If any image was going to have a significant impact, this was the one.
The image really hammered home just how poorly our son had become and there were tears shed that evening.
We asked ourselves why we were agreeing to allow Max to be in the public eye.
There were two main reasons. We agreed that the law should change, so that members of the public would have the choice of ‘opting out’ as well as ‘opting in’ to organ donation.
If you didn’t ‘opt in’ or ‘opt out’, then organ donation consent would be ‘deemed’. We felt that a law change could raise awareness, increase the number of ‘known decisions’, thus increasing the consent rate and reducing the wait for anybody of any age needing an organ transplant.
We also understood that any law change would result in a ‘soft opt out’ system, meaning that the family would still have the final say.
What clinched the decision? Max also gave his blessing for the sharing of this, oh so personal, photograph.
He understood that it could help him and help others also. We knew what it felt like to have a loved one ‘languishing’, ‘deteriorating’ on ‘death row’.
It was like torture, purgatory, highly emotional, both physically and mentally draining.
If there was anything we could do to reduce this stress for others, then we were prepared to chip in.
The other big reason was a selfish one.
We felt that sharing Max’s story might just strike a chord with a bereaved family and result in consent to organ donation, which might not otherwise be forthcoming.
In other words, it might just result in Max getting that precious gift.
We would do anything, if there was the slightest chance that 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 page of the Mirror no fewer than 15 times over the coming months.
Then the government started to listen: ‘Hope for critically ill Max, 9, as Theresa May promises, “We are looking at organ donation law”.’
By now, the Mirror had also set up a public petition to collect signatures: ‘Pressure mounts on Theresa May to change organ donor laws as Mirror appeal hits 10,000 supporters.’
In July, 2017 Emma attended Parliament with Max’s brother Harry as MPs discussed the law change.
She described the experience as strangely surreal.
It was difficult to comprehend that the little boy being referred to was her little boy.
Shortly afterwards, Geoffrey Robinson presented the first reading of the ‘Organ Donation Deemed Consent Bill’.
Just weeks later, she was invited to the Labour Party Conference in Brighton to be a guest speaker at one of the fringe events organised by the Mirror to promote their campaign.
In her speech, she told delegates of Max’s diagnosis, adding: “We were told that our son had a 33% chance of getting better, a 33% chance of requiring a heart transplant and a 33% chance of passing away. Our world was turned upside down.”
The campaign gathered pace; within weeks, Max and Emma were invited to the 50th Anniversary celebration of the first ever heart transplant which took place in South Africa, performed by Christiaan Barnard.
Max delivered a PowerPoint presentation, ‘My Heart Story’, with aplomb.
Emma was so proud of him standing up there in his electric blue suit and matching ‘Heelys’! How far he had come!
In one of Max’s later interviews for BBC North West Tonight, he was asked how it feels to have a law named after him.
He looked down and quietly said, “It would be nice if the law could be called ‘Max and Keira’s Law.’”
The change in the law, when it comes, will also be a part of Keira’s mark on the world.
On Oct 29, 2018, we stood waiting to join the red carpet which led to the Pride of Britain awards.
Max had been selected as a winner of the Child of Courage category.
Later, as we looked across the room towards our table at the Grosvenor House Hotel in London, we noticed the figures of Keira’s parents – Joe and Loanna Ball, already seated.
As Max and Joe saw one another, they both jogged on a collision course as quickly as the table arrangement allowed, and engaged in a massive hug. They have such an amazing bond.
We were delighted Joe and Loanna would be sharing this evening with us – not only was the award and law change campaign that had given rise to it a part of Keira’s legacy; Max would simply not be here without the Ball family, so how lovely to have them with us for this special occasion.
In his little speech, Max acknowledged Joe and Loanna, who thus received a spontaneous standing ovation for being the true heroes they are.
Max encouraged people to donate: “Why waste your organs,” he said, “you could save four lives – nine lives.”
Golden Heart, adapted by Jeremy Armstrong; in support of Sick Children’s Trust, the Children’s Heart Unit Foundation and Inspired by Keira. To buy in paperback (RRP £17.99) or eBook (RRP £3.50) click here at a 30% discount; also at Amazon and Waterstones.
A heartfelt letter of thanks
Before Emma and Paul Johnson had met Joe and Loanna Ball – the parents of Max’s heart donor Keira Ball – they wrote them a letter of thanks.
Here is an extract from that letter:
We hope that it brings you some comfort to know that Max’s post-transplant recovery has been smooth and without complication.
His new heart has been described as a ‘happy heart’ and a ‘brilliant heart’.
Max is very thankful and he is looking after his new heart.
He says ‘Good Morning’ to his new heart every day and sends it lots of love.
He is eating healthily and exercising when he feels able, so that his heart will stay fit and strong.
Max is full of energy and enthusiasm, as a result of the new lease of life that has been gifted by your family.
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