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We know just how important a change in the law would be to families with children waiting for a lifesaving organ donor.

Blog post   •   Oct 05, 2017 13:28 BST

Max Johnson with the letter from Prime Minister Theresa May.

Every year we support around 4,000 families with critically ill children, many of whom are undergoing or waiting for organ transplants. Sadly, not every child will receive a transplant in time due to a shortage of organ donors nationally. The weeks, months or even years spent waiting for a transplant are hugely traumatic for the child and their entire family.

That’s why we are thrilled to hear that Prime Minister Theresa May has announced that she will look at changing the law to an opt-out organ donation system, similar to that already in effect in Wales.

Earlier this year, we worked with the Daily Mirror on their campaign to raise awareness of the need for donor organs and to change the organ donation law. We put them in touch with families who had been affected and were willing to talk about their experiences, families like Archie’s, Hasnath’s and Max’s.

Nine year-old Max Johnson has fronted the Mirror’s campaign and the paper has followed his heart transplant journey. We supported his family at Scott House, in our free ‘Home from Home’ accommodation, throughout his treatment at Newcastle’s Freeman Hospital. After more than seven months of waiting, Max has now received his new heart and we’re delighted that he is enjoying life back home with his family. We recently learnt that Max received a special letter from Prime Minister Theresa May to say how inspirational she found his story and that she loves the idea of naming the change in the law after him – calling it ‘Max’s law’.

Jane Featherstone, Chief Executive of The Sick Children’s Trust, says: “We’re thrilled to hear the news that the government are looking at changing the organ donation law to an opt-out system. As a charity which supports families with seriously ill children, many of whom are desperately waiting for an organ donor, we know just how important this change is and how many more lives will potentially be saved. For a child waiting for an organ, a transplant represents their only hope, a final chance for life. It is devastating that so many do not find a donor in time, due to a shortage of organ donors. To hear how well Max is doing after his recent heart transplant is just fantastic, and shows how important this change to the law would be. We are delighted that Prime Minister Theresa May took the time to write to Max after being inspired by his story. We will be watching developments with interest and congratulate the current party leaders for bringing this important issue to the forefront during their Party Conferences.” 

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