Our Max is looking after your heart...
Parents’ extraordinary letter to donor family who gave son new life
THE parents of transplant hero Max Johnson have promised the donor family who saved him he is taking good care of their precious gift.
Max, 9, spearheaded the Mirror campaign for a new opt-out donor law to save thousands of lives.
In a moving letter, his parents say: “Max is very thankful and he is looking after his new heart.”
IT’S a letter Emma and Paul Johnson feared they might never be able to write, as they waited seven months for son Max’s new heart.
And that makes the thoughtful words to the unknown donor parents all the more poignant.
Explaining Max, nine, had his heart transplant in August, which was his “only chance of coming home”, they emphasise how they will never forget the selfless compassionate gesture.
“He says ‘Good Morning’ to his new heart every day and sends it lots of love,” they write.
“We would like to thank you for the incredibly kind, courageous decision that you made to allow organs to be donated.
“We do not know the circumstances, but can only imagine the dreadful, harrowing time you have been through and are doubtless still going through, with the loss.
“You have made a selfless decision, we are indescribably grateful.”
Brave Max received his heart in a nine-hour operation at the Freeman Hospital, Newcastle.
He waited patiently for the gift of life, and pleaded with Theresa May for a new “opt-out” law on organ donation to save the lives of countless others like him.
Mrs May announced the new law at the Tory party conference last month – and has vowed to call it Max’s Law in his honour. Emma and Paul promise in their letter to the donor that their son will take good care of his new heart.
“We hope that it brings you some comfort to know that Max’s post-transplant recovery has been smooth and without complication,” they write. “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 is eating healthily and exercising when he feels able, so that his heart will stay fit and strong.”
Max is on a strict regime of medication to ensure that the heart stays healthy. His parents know that he will have to follow a daily regime of pills and drugs into his adult life. But they tell the donor family that their sacrifice has transformed all their lives.
“Max is full of energy and enthusiasm, as a result of the new lease of life that has been gifted by your family,” they explain. “He is relishing every moment at home, without sickness, tubes, wires, machines, procedures.
“It was a very upsetting time, waiting so long, but when we did get the call, we prayed for you and your family. We continue to pray
for you and think about you.”
They pay tribute to the “legacy of love” and tell the donor’s loved ones: “We thank you so much for making a decision that has saved our son and given him the prospect of a future. We will encourage him to cherish his heart.”
They pledge it will be cared for “in memory” of the loved one who donated it. The letter ends: “With all our love and eternal gratitude, Emma and Paul.’ Civil servant Paul, 44, admitted it had been emotional finding the words for the letter.
“Max’s personality and character is as it was one year ago before he was poorly,” he said. “It is like we have our son back again. That is partly because of the amazing care he received over so many months at the Freeman in Newcastle.
“But of course above all thanks to the courageous, incredibly generous decision by the family who said yes to donating. I know Max will write them a letter too some day.
“What a wonderful thing they did. None of this would have been possible without them. They have saved our son’s life.”
Market researcher Emma, 47, hopes other donors will keep coming forward to save lives as England and Ireland wait for the new “opt-out” law.
“I applaud Theresa May for seeing this is an issue which transcends politics,” she added. “We wanted the donor family to know how grateful we are, we can never thank them enough.”
Max sent them “the biggest thank you in the world”.
Last week we revealed Mrs May wrote a touching letter to the schoolboy, of Winsford, Cheshire, to give him the news.
She told him: “When I read your inspirational story, I knew I had to act to change the organ donation rules to an opt-out system. I and my Government will call it Max’s Law.”
Mrs May is to change the organ donor system in England and Ireland following a two-year campaign by the Mirror. We have called for a system of presumed consent across the UK, whereby organs become available unless people decide not to take part, since 2015.
Hundreds die needlessly every year as organs are wasted when they could be used to save lives. More than 6,500 people are on the organ donor waiting list.
Children wait an average of 463 days for a non-urgent heart transplant, and 70 days for an urgent heart transplant. More than 12,000 readers backed our petition for the “opt-out” law.
Thousands more backed our campaign by signing the NHS organ donor register – at www.organdonation.nhs.uk – after reading The Mirror’s first story on Max in June.
When I was a child, there was nothing I liked more than going out and learning about the world. That is what inspired me to become a bushcraft master, and it has been my passion for 35 years.
Children haven’t changed since then. They have always been brilliant learners and full of energy.
But the way we let children experience the outside world has changed. This week, Gloucestershire police wrote to residents telling them to report children for playing football in the street.
They may have a good reason for doing so, but it seems that more and more often we are discouraging children from spending time outdoors. I’ve heard parents say their children are safer at home than they are outside, because they know where they are and what they are doing. I think there are two reasons for that.
I think people are fearful of who else might be out there and what harm they might cause their child. And I think they are afraid that they don’t know how to teach their child how to enjoy the outdoors.
Yet many parents are perfectly happy for their children to use the internet unsupervised, thinking they are safe if they can see them on a computer or a mobile phone.
They don’t understand the online world their children inhabit any more than the natural world they are so keen to protect them from, but the internet can be just as dangerous as the world outside their home.
Keeping children safe online can be extremely difficult, but we can teach them how to stay safe outside and how to appreciate the natural world around them.
Because there are so many benefits to spending more time outdoors. The number of obese children in the UK has risen from 360,000 in 1975 to 1.1 million last year.
That is a huge problem, and it underlines how important it is to encourage children to be active and spend more time outdoors.
It’s not just about the physical benefits – spending more time outside can improve mental health too. And there are so many skills we need to pass on to the next generation. But children need the right teachers, people who know what they are talking about.
That is a big problem at the moment. Everyone thinks you can access knowledge online and become an expert, but there is no one there to filter all that information, so they could be teaching children the wrong thing.
It’s very important that children are taught life skills at school, and that is what bushcraft is all about.
It’s not about pitting yourself against nature, because nature will always win. It’s about learning to live with nature. We should be teaching youngsters first aid and basic survival skills. But I also think children should learn to recognise trees and plants. That way, they can gauge what is happening to the environment.
One of my biggest fears is that we become a completely urban nation. That breaks my heart, because I’ve always seen this country as a green land, with its parks and woodland. We need to put a premium on our green spaces and make sure people that people have access to them.
And we need to make sure everyone has the opportunity to learn about the natural world, because that is the only way to make sure they value and care for the environment. If we don’t let children grow to love nature, how can we expect them to protect it in future? It is so important that each of us works to protect the environment, because we are facing such an uphill struggle.
Last month, I watched two guys get in their car, empty all the waste from their takeaway food on the ground, then drive off. They had no respect for their own country. It’s the same with people who go to festivals and abandon tents because they can’t be bothered to pack them away, thinking someone else will do it.
We really need to get everyone involved in caring for this beautiful country, and the only way to do that is to make sure they appreciate the world around them. We need to teach our children that there are daily opportunities to make the world a better place.
This is not about saving the planet – it’s about us. We need clean air, clean water, and healthy food if we are to survive. We depend on the natural world. Many of us may live in cities, but our food is grown in the country, so we need to wake up to the fact that what we do will change the environment.
We have to be proactive and start looking after the natural world. If we do, we won’t just safeguard it for future generations, we will safeguard it for the other species we share this planet with, and that will enrich our lives.
That’s the great thing about learning about nature – it brings so much joy. We should be helping our children to discover that for themselves, not shutting them indoors away from all the happiness that nature can bring.
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We must teach kids life skills, and how to love and care for our planet