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Just before his 9th birthday, Max got very sick and was diagnosed with dilated cardiomyopathy, a disease which caused his heart to get much too big meaning that it couldn’t pump blood around his body properly. Max and his family were told that the only way to make him fully better forever was a heart transplant (where doctors would take someone who recently died’s heart and put it in Max’s chest instead of his own heart). Max was put on the urgent heart transplant waiting list, but he soon found out that the waiting list was very long. He learnt that people had to ‘opt-in’ (give permission) to organ donation before they die, and many people weren’t doing this because they simply didn’t know about it! So many people’s organs that could have been donated to save a life were not able to be used.
While Max was nervously waiting for a heart to be donated, he decided to try and change the situation so that people would no longer have to face the same long and nerve-wracking wait that he had. First, he set out to raise awareness of organ donation so that more people would ‘opt-in’. He told his story on a BBC 2 documentary called ‘Heart Transplant – A Chance to Live’, and increased organ donation registrations by 500% overnight!
Next, he decided to try and change the law so that people no longer needed to ‘opt-in’ to organ donation. He spearheaded The Mirror campaign to ‘Change the Law for Life’ and inspired almost 15,000 people to sign a petition to make organ donation ‘opt-out’. When Theresa May, the Prime Minister at the time, saw Max’s story she was completely taken aback by it and pushed for the ‘The Organ Donation Deemed Consent Bill’, also known as an ‘opt-out’ organ donation system, in England and Northern Ireland, which was brought into practice in Spring 2020. The law has been named ‘Max and Keira’s law’ after Max and his amazing heart donor, Keira.
In the time that Max was petitioning, he received a call to tell him that a heart had been donated and doctors were ready to transplant it. Max was whisked into the operating theatre and given his new heart, which enabled him to get back to doing all the sorts of things that 9-year-olds like to do! Now Max is an active supporter of the British Heart Foundation charity and travels around the country speaking to people and encouraging them to support the British Heart Foundation. In October 2018, Max won the Pride of Britain ‘Child of Courage’ award for his amazing work. Since then, Max has continued to be rewarded for his amazing work, winning the ‘British Citizen Youth Award’ in October 2022.
