A MUM who helped change the law around organ donation after her son’s life was saved by a heart transplant has given an emotional talk at the Countess of Chester Hospital to mark the latest Organ Donation Week, six years after his pioneering operation.

Emma Johnson’s son Max made headlines across the UK in 2017 after spearheading a national media campaign that introduced an opt-out system for organ donation.

Diagnosed with dilated cardiomyopathy at just eight years old, Max, from Winsford, spent 206 days in hospital on the urgent transplant list before being given the gift of life in the form of a heart transplant from the family of nine-year-old Keira Ball, who died in a car accident.

After Max recovered, he became a key voice in raising awareness of the need for more families to consent to organ donation and when the government announced in 2018 that the law would change, it was named Max and Keira’s Law in recognition of both youngsters.

As Max, now 15, prepares to start year 10 and focus on his schoolwork, Emma has taken the reins from her son by becoming an organ donation ambassador with NHS Blood and Transplant, and she has given a staff talk in this capacity about her experience at the Countess, one of her local hospitals, on September 15, ahead of Organ Donation Week.

Emma said: “When the news was broken to us back in early 2017 that Max would need a heart transplant to survive, it felt like a terrifying worst-case scenario – almost like it was the beginning of the end. Actually, it was the beginning – a second chance, a fresh start.

“As we readjusted to our ‘new normal’ life post-transplant things were not without complications, frustration, worry and at times, exasperation, but how lucky and blessed were we to be able to call ourselves a family of four, rather than a family of three?

“Whilst we are ‘complete’, donor families are one short – incomplete, bereft. And yet, they have breathed life into other families, sometimes three-fold, four-fold, or even eight-fold, by giving their blessing to donate their loved one’s organs in their hour of sharpest grief,” she added.

Emma went on to describe how Max lives life to the full, six years after his lifesaving operation.

“He is a creative and practical soul and his hobby is carp fishing which he absolutely loves,” she explains.

“He has solidified friendships though fishing, learned new skills and spent so much time in nature, outdoors that he believes fishing has given his life a sense of purpose, like medicine for the mind.

“Max was faced with his own mortality at the tender age of eight, but he has a more rounded understanding of what this actually means now.

"As Max has matured, the reality of his situation in terms of what transplantation can mean, has become clear to him and at times, this has been mentally difficult for him, making it hard to consider his future options.

“But despite this, he passed his Duke of Edinburgh Bronze expedition and last year was honoured with a British Citizen Youth Award in Parliament for his efforts to promote organ donation and was also recognised at school with a Good Citizen of The Year Award.”

Emma added: “Max continues to love life and knows full well to treasure the gift of life, each and every day. We never forget that as Max grows older year by year, Keira – his donor, stays forever nine.

“And yet, her heart lives on, powering him through life with every pulsing beat.”

Rebecca Gallagher, specialist nurse in organ donation at the Countess of Chester Hospital NHS Foundation Trust, said: “The gift of life is precious and the more we can do to make our staff aware of the importance of donation and how to spot when a patient might be a suitable donor the more it will improve the chances for those who urgently need a life-saving transplant.

“When a patient is sadly unlikely to survive but may be able to be an organ donor, I would check the organ donor register and involve the family in the donation conversations.

"It is therefore so very important for the local community to hear from people like Emma about the impact that transplants have on the family who are on the other side of this really emotive experience for all.”

“Organ donation saves lives and I would ask that you take time to consider your decision, make your loved ones aware and register your decision.”

Even though the law around organ donation has now changed to an ‘opt out’ system across all countries in the UK, family members will still always be involved before organ donation goes ahead and will be expected to support their loves one’s decision. This means it is still just as important as ever to register your decision on the NHS Organ Donor Register and ensure your friends and family know what you want.

Currently there are more than 7,000 people waiting for a transplant in the UK and with only one per cent of people dying in circumstances where organ donation is possible, it is vital that people register their decision to be a donor.

  • During Organ Donation Week, people are being urged to register their support for donation on the NHS Organ Donor Register. To find out more, visit www.organdonation.nhs.uk or call 0300 123 23 23. Or use the NHS app to check, amend and update your decision.