Heart transplant champion hopes to inspire people to become heroes

Crusading heart transplant champion Max Johnson has spearheaded new legislation known as Max and Keira’s Law comes into effect today, Wednesday.

Under the new rules, consent for organ donation will be presumed unless people opt out and it is hoped that up to 700 lives could be saved.

Three people a day die waiting for an organ donor.

The law is named after Max, 12, who is only alive today thanks to receiving a heart, and nine-year-old Keira Ball, who tragically lost her life in a car crash and saved Max's life.

Max 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 two families have met many times and developed a close bond.

"I feel really sorry for them because they’ve lost a child," said Max. "I can’t imagine how hard that must be.The way Joe, Keira’s dad, said yes (to donating Keira’s organs) is just… thank you, Joe."

Max hopes more lives will now be saved. "With the new law, the opt out makes it so you don't have to sign up to the donor register.

"When you die, some of your organs may go to someone, you could be someone’s hero."

Max, 12, with mum Emma, 50, brother Harry, 14, and dad Paul, 46

Max was only eight when he suddenly fell ill and was diagnosed with dilated cardiomyopathy.

Doctors implanted an electric pump to keep him alive but his health was rapidly deteriorating.

Max spent 206 days in hospital on the urgent transplant list.

Mum Emma, 50, said: "“Max was only a whisker away from dying. His surgeon Asif Hasan said he was as close to death as you could every possibly me.

"I am 100 per cent certain that if Keira's organ hadn't been donated Max wouldn't be here now."

The transplant has transformed Max’s life.

“Max has got his freedom back,” said Emma. “He can just enjoy being himself and thrive. He swims and walks. Max has a future ahead of him that he wouldn’t have had, a fresh beginning, a new life.

"We hope that more people like Joe have the generosity, compassion and care to say yes to organ donation.

Max and his family are 'eternally grateful' to the family of Keira Ball for donating her heart

"It must have been an absolutely horrendous time for him and his family. We are eternally grateful.

“I am so glad that the law is in both their names,” said Emma. “Max represents the suffering and the second chance given to recipients.

“Keira is symbolic of every organ donor and the difficult decision at a very sad time in their lives.”

Max's dad Paul, 46, is now creating a tribute to Keira in their garden. "It will be somewhere we can go to and reflect on what we've been through as a family but appreciate that life we live now would not have been possible without the generosity and humanity of Joe, Keira and the Ball family."

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Emma and Paul have shared their rollercoaster of pain, anguish, pride, joy and euphoria to encourage more organ donors in an emotional book, Golden Heart.

Emma wanted to tell their story to help people to understand the trauma families face waiting for a suitable donor whilst watching the health of their loved one ebb away.

Throughout the ordeal, she stayed by his bedside, recording her fears and details of Max's battle in a diary. Every Sunday she wrote a blog to update family and friends.

"Friends said I should write a book," said Emma. "So we used my diary interspersed with Paul's reflections which are more analytical and profound. He is more poetic and emotive and pulls at the heartstrings. Mine is practical about what actually happened."

A portion of royalties from the book will be donated to InspiredbyKeira, a charity set up by her parents Joe and Loanna to help other families, The Sick Children's Trust and The Children's Heart Unit Fund.

"The book might not be perfect as we are novice writers but our words are heartfelt and honest," said Emma, who now volunteers as an organ donation ambassador.

"Recalling the memories of everything that happened was sometimes difficult but we hope it will help people to understand what it is like waiting for an organ.

"We want to encourage people to have a conversation with their loved ones so their families know their wishes."

Golden Heart is published by Austin Macauley.