Transplant survivor Max Johnson has told of his despair as he waited for his new heart - and how he once “yanked” out a wire attached to the machine keeping him alive. The size of the heart is important, meaning a donor of a similar size is needed. And they worked tirelessly to help the 5,000 currently on the organ donor list. “But NHS studies have found many parents have said in hindsight they would have agreed. He adds: "Thank you for sharing mine and Keira's story around the world. The idea of the transplant never happening is unthinkable. "Max’s story personified the cause and put a human face to the proposed law change. Anthony Clarkson, of NHS Blood and Transplant, said: “We hope this will prompt all of us to consider whether or not we want to donate our organs.”. Max was eight when he was diagnosed with dilated cardiomyopathy, a crippling disease that affects the heart muscle. Our Change the Law for Life crusade helped bring in the new system last May in England where adults are understood to be donors when they die, unless they state otherwise. For five-year-old Frankie Lord, who was in the Freeman at the same time as Max and featured in the Mirror on Tuesday, it was a 21-month wait for his parents Sophie and Chris as they watched the agony of their little boy clinging to life. "Let your organs go to waste and just decay (when you die) - or save a few people's lives?". Roseleila, 34, from Luton, says: “I can only imagine how raw and devastating a conversation about organ donation could be when a parent has just lost a child. Paul and Emma, of Winsford, Cheshire, wrote a book called Golden Heart, in which they vividly describe the ordeal of parents whose children are on the transplant list. ", Follow Ethan’s journey on Instagram at @ethaneaves_2019. Health Secretary Matt Hancock said: “Coronavirus has vividly reminded us that life is a precious gift, one that we must do all we can to treasure and protect. When you subscribe we will use the information you provide to send you these newsletters. He was born a healthy 8lb 10oz and when sent for a routine heart test because of his family background was given the all clear. She has serious renal problems caused by vacterl syndrome. Brave schoolboy Max Johnson has a new heart at last - after a national search for a suitable donor was successful. "It is nice but it is crazy when you think about what happened four years ago. Your information will be used in accordance with our, The law was changed in a victory for the Mirror, A new opt-out system for organ donation has come into practice called Max and Keira's Law. Max’s Law will save up to 700 lives a year Max was eight when he was diagnosed with dilated cardiomyopathy, a crippling disease that affects the heart muscle. The fact that she has gone on to save four lives is amazing.". But for some, the call never comes. Before the pandemic, children waited an average 70 days for a transplant – compared with 29 for adults. But those in dire need of transplants, who would die without an organ, will still have surgery. Max and Keira’s Law, which came after a four-year campaign by the Mirror for an opt-out rule, does not apply to under 18s and parents still have to give permission for doctors to use their children’s organs. Around the same time, Max Johnson, 10, was fighting for his life at Freeman Hospital in Newcastle and was in desperate need of a heart transplant. Heart … The parents of his donor Keira Ball, who died in a car accident aged nine, tell of their pride in their kind-hearted little girl's final gift. I just looked at Keira, and I was sure if Keira had been asked, she would have said yes. Because if a call comes to say a donor heart has become available, 14-month-old son Ethan’s life depends on it. But he still believed the new law was right. The 12-year-old was gutted to discover that the rear wheel of his bike had been stolen and the back brakes and chain smashed. Dale Gardiner, National Clinical Lead for Organ Donation says: “A large part of achieving law change for organ donation in England was a case of having the right bill at the right time, however it was the story of Max and Keira, which was one of the key driving forces and truly rallied the nation. When you subscribe we will use the information you provide to send you these newsletters. She said: “During the peak of the pandemic, there were many days that there were no transplants. It was backed by footballer Andy Cole – who received a kidney from his nephew Alexander Palmer – surgeon Sir Magdi Yacoub, The British Heart Foundation, Kidney Care UK, the British Medical Association and Kaylee Davidson-Olley, the first successful and longest surviving baby transplant in Europe after receiving her heart at just five months old. Or call the advice line on 0300 303 2094. Peter, inset, a civil engineer who ran marathons, told his family he wanted to donate his organs, which saved and transformed 17 people’s lives. But Roseleila and Richard could face an even longer wait due to the ­coronavirus pandemic. Even at 10, he was thinking of others, admitting he might not make it. Campaigners – including Max himself, now a healthy 12-year-old – have welcomed the news, arguing that it … Keira Ball was nine years old when she died in a car accident. ", Are you signed up to our newsletter? All day and night, Roseleila Eaves has her phone on full charge, the ringtone set to loud and always within easy reach. "I would say to everyone talk to each other and ask what decision will it be? Transplant teams will talk to patients and balance their need against the additional challenges of being immunosuppressed at this time and the challenges being faced within the NHS at this moment.”. We revealed that 457 Brits could have been saved that year if an opt-out system had been in place. Mirror.co.uk”Please save my life Prime Minister”: Heart transplant boy Max Johnson in plea to change donor lawMirror.co.ukSchoolboy Max Johnson has made an impassioned plea to Theresa May over his desperate need for a new heart, urging the PM: “Please change the law to save me.” The nine-year-old, who made the emotional appeal last night, has been waiting six months …and more https://www.mirror.co.uk/news/uk-news/put-little-max-public-eye-20661187 The brave 12-year-old urged more people to consider becoming donors – on the eve of the opt-out rule bearing his name and that of the little girl who saved his life being adopted in England. Max Johnson, from Winsford, is only alive today thanks to receiving a heart from nine-year-old Keira Ball who tragically lost her life in a car crash. The tot has been in Great Ormond Street Hospital since August last year and is hooked up to an artificial heart. The 11-year-old Winsford schoolboy bowled the entire first over and even had a go at fielding after some tuition from the team. Care minister Helen Whately told the Commons yesterday “over 5,000 people in England are waiting for a transplant”. Max was filmed as he celebrated his 13th birthday in … Join our campaign to save lives by changing the law on organ donation. The 12-year-old has spent months shielding at home in Winsford and had only recently returned to the classroom. Max and Keira’s Law does not apply to under-18s and parents still have to give permission for doctors to use their organs. The soft opt-out system comes into force in Wales after a 2013 law change. Doctors implanted an electric pump to keep him alive in the short term, but told his parents the … To put that in context, there are 6,000 people on the UK transplant waiting list , … “She stays cheerful and positive and that helps me and my husband, Jason. "I honestly was ready to die, I did not think I would make it," he says. Max’s Law will save up to 700 lives a year. People like Max Johnson might benefit: he had a lifesaving heart transplant at age 9. Mirror campaigner Max Johnson will tell medics: “I did not think I would make it” in a moving film about his heart transplant. Prime Minister Theresa May gave the bill government backing. The NHS opt-in donor register was launched in 1994 but they hoped an opt-out system would eventually replace it. Max, filmed at his home in Winsford, Cheshire, says of his transplant: "I thought about four years ago that I might not make it. ", Proud mum Loanna added: "It was tragic, heart wrenching that we lost her, but unfortunately nothing could be done for Keira. Loanna and Joe also work hard to reassure parents who might consider organ donation if the ­unthinkable were to happen, and they were to lose a child. “It’s why the new organ donor opt-out law, which comes into force today, is so important.”. “Capacity and resource must be built back up so that precious organs do not go to waste.”. She is a hero. Max is seen reading a letter from then Prime Minister Theresa May - written after she read his story in the Mirror - in which she tells him of her plans for the new organ donor law. Emma said: “What I say to people is how would you feel about organ ­donation if your child needed an organ? More than 100 kids in the UK need an organ transplant and 40 of them are waiting for a heart. “This law is so important. The Daily Mirror launches its Change the Law for Life campaign calling for legislation change in England too. In a 12-hour op, Ethan was wired to a mechanical heart after his own began beating dangerously fast. One of those lives is 14-month-old Ethan, who has been waiting for a heart since August to replace his enlarged one. “Many young lives would be saved if those conversations were had now. At the time there was no database to match donors with patients who needed a transplant, so Christine, of Wolverhampton, launched her lifesaving campaign with dad John and mum Rosemary. The tot is hooked up to an artificial heart as mum Roseleila and dad Richard look on helplessly. and I am so happy that they have done it," he says in the film. Max, recovering after his nine-hour heart transplant op, was “over the moon” when dad Paul read the letter to him. Something went wrong, please try again later. The couple’s charity, Inspired by Keira, is helping bereaved parents cope with the loss of a child. Teddy Houlston became Britain’s youngest donor, donating his organs after dying aged just 100 minutes. He is blissfully unaware they are keeping him alive until a tiny heart transplant takes place. And health minister Lord Bethell has said that while NHS bosses had no choice but to impose the policy many organs had been “wasted” as a result. MAX JOHNSON Print; Email; Heart transplant patient was instrumental in changing organ donation rules. Her dad Joe, of Barnstaple, Devon, recalled the moment when specialist nurses asked him if he had considered organ donation. Its medical director for organ ­donation, John Forsythe, said: “As the situation with Covid-19 is ever changing, so is the picture regarding donation and transplantation. That they thought of others at such a difficult moment.". In footage filmed shortly after Max's heart transplant at the Freeman Hospital in Newcastle, he vividly describes his fight for life. Your information will be used in accordance with our, Max Johnson is the face of the Mirror's campaign, Little Ethan Eaves is hooked up to an artificial heart, Max wants more people to be willing to become organ donors, Keira Ball was just nine when she died - donating her heart to Max, Little Frankie Lord, pictured with brother Freddie, endured a 21-month wait for his parents, Christine Cox holds a photo of her brother Peter who donated organs to 17 people, Keira Ball's name forms half of the new Max and Keira's Law, We told incredible stories over the years of the campaign, In June 2017 we urged politicians to act to save lives, Max finally got the heart he so desperately needed in September 2017, Young hero Max gets a law in his and Keira's own names, In October 2017, the Mirror and brave young Max won the campaign, Little Ethan's life depends on getting his new heart, Subscribe to Daily Mirror and Sunday Mirror newspapers, Mum who nearly died after birth saved by miracle heart transplant - 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The film is part of the Congress Live 2021 event hosted by Dr Dale Gardiner, the UK National Lead for Organ Donation. Ethan was diagnosed with an enlarged heart in August 2018, seven months after engineer dad Richard, 37, had a transplant for a different heart condition. “Max and Keira’s Law,” the opt-out law due to come into force in England in 2020, is named after him and Keira Ball. You can sign up here to get the day's biggest stories straight to your inbox. Mum Gemma, 37, of Sheffield, says: “Amelia stays positive by saying things like, ‘When I get a new kidney I’ll be able to jump really high’. Christine said: “This is the best birthday present I could have wished for.”. The nine-year-old is the poster boy of … That was just the way that she was. Heart transplant champion Max Johnson was a mascot at the England and Wales Transplant Cricket Team when they played against Barnton on Sunday. Amelia Brown has been waiting for a new kidney since she was born eight years ago. "I hugged mum and dad and thought 'this is the last hug with my parents. … ", His mum Emma, 51, adds: "It just felt so unfair because he was such a sparky little boy. And he still remembers them now.”. “He remembered them when we decided to join the Mirror campaign almost exactly three years ago. Those who are able to be treated, such as kidney patients on dialysis, may be expected to wait longer for operations. “As of last week there have been 167 referrals, 11 donors and 38 transplants. Mum Emma, 50, said: "Max was so upset. Prime Minister, 2016-19 6 October 2017 Prime Minister Theresa May writes to nine-year-old heart transplant recipient Max Johnson to tell him that the proposed new law will be referred to as Max’s Law, in recognition of his organ donation campaign work. HEART transplant champion Max Johnson was gutted to discover vandals had wrecked his bike. EXCLUSIVE: The Mirror campaigner's story inspired England's new organ donor law and will now be told in a moving film at an NHS conference, Get email updates with the day's biggest stories. It will include a panel of UK donation and transplant leaders, telling medics from around the world about the Mirror-backed 'opt-out' law. A mechanical device kept him relatively safe while he waited for a new heart. NHS Blood and Transplant had a huge rise in the number of donors signing up. As doctors prepare to start ramping them up again, Max pleaded: “If you can save lives when you die, why wouldn’t you?”. “Sadly, it’s not a cure and comes with a risk of blood clots,” says Roseleila. The British Transplantation Society (BTS) and NHS Blood and Transplant Joint Congress will virtually bring together 800 clinicians working in both organ donation and transplantation from across the UK. “He desperately needs the transplant. 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