Brave Max remembers Keira, 9, who 'saved his life' 5 years on from organ donor bill

The Mirror-backed Max and Keira's Law has just marked its fifth anniversary after helping to save thousands of lives. Our campaign to bring in opt out in England was successful thanks to Max Johnson, just nine years old when he of Keira Ball, who tragically lost her life in a car accident.

Despite his tender years, he asked that she be included in the name for the new legislation, and it was named Max and Keira's Law in their honour. Opt out means people no longer have to carry a , and all adults in England are considered as having agreed to donate their own organs when they die unless they record a decision not to donate or are in one of the excluded groups.

Last year, there were 1109 cases where deemed consent was applied, NHS research revealed. Max's parents Paul and Emma told how their son, now 17, had grown into a young man with a job and a driving licence.

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They said that it was all thanks to the selfless decision of Keira's dad Joe Ball to donate his daughter's organs as her mum Loanna lay in a coma following the car accident. The joined Max on the River Weaver in his hometown of Winsford, Cheshire, as he told us of his love of , his new car and his first job. He has never forgotten the debt owed to the donor family who have made his life possible.

He said: "I think it's brilliant because even now, recently, we got an email saying how the law still makes a difference.

"It's nice to know that it's helped people down the line." On the day of his heart transplant, in August, 2017, he remembers giving his dad a hug in case he 'did not see him again'.

"I do remember the downsides, the drive line that you have to carry around with you," he added. "But I also remember the positives. It is good to know that the law will save lives.

"I remember giving my dad a hug. I think even at the age of nine I was thinking that I might not make it. So of course I'm going to hug my dad."

He paid tribute to the skill of surgeon Asif Hasan, and remembers seeing his heart being removed and replaced as it was filmed for a TV documentary, another historic first.

He is still in touch with Keira's family, her parents Joe and Loanna, Bradley, 15, Katelyn, 19, and 20-year-old Keely. He had a 'moving' first meeting with them as Keira's siblings listened to their sister's heart beating in his chest using a stethoscope.

And he made sure that Keira was named in the law after making an appeal to Prime Minister . "I'm glad she listened," he said. "She did think about my request and gave her full credit."

Now, he is studying for GCSEs before he intends to do an engineering qualification, and may yet try to become a fireman. "I think that would be an exciting job," he said. "I would like to help save lives."

Experts believe the law in Max's name is already doing just that, with an extra 700 lives saved or transformed every year; the percentage of the population signing up for organ donation has grown from 33 per cent to 45 per cent.

His mum Emma said: "It is really important that people make their decision and then record their decision on organ donation through the national register and then share that decision with their family. So if this law change has become a springboard to people making those decisions, then I am incredibly proud of Max and Keira."

Max's dad Paul, 51, a civil servant, recalled the day of his son's operation, admitting that they knew he was in the last chance saloon and might not make it.

He added: "It's hard to imagine that it has been five years since the law changed. In that time, Max has grown into a young man, with a weekend job, GCSEs to sit and a driving licence.

"Our thoughts never stray far from Keira and the Ball family, because none of this would have happened without them. Thanks to the tireless work of Blood and Transplant, numerous brilliant charities, an army of volunteers and, of course, The Mirror, organ donation remains in the public consciousness.

"If the law change has helped with this work, then we are delighted and humbled. Please, have that conversation, so that you leave those that matter certain about your wishes."

Keira's mum Loanna, 40, of Barnstaple in Devon, told the Mirror that her daughter's name 'will live on forever' in the new law. She said: "It means that her life was not wasted. So much good has come from that devastating loss for us, she has benefited so many people by donating her organs.

"I would still choose for her to be here with us, but the law change and the donations were a marvellous thing because I hear of Max and Keira's Law and we know that it took the two of them to make that happen.

"I see photos of Max now and he is a young man, he is all grown up, he is not that little boy any more. Keira saved his life and will never be forgotten."

There are around 277 children in the UK waiting for an organ transplant, according to the NHS. That includes 141 who need a kidney, 76 waiting for a liver and 43 who need a heart transplant with many children on the waiting list relying on organs from a child who has died.

Anthony Clarkson, Director for Organ and Tissue Donation and Transplantation at NHS Blood and Transplant said: "The opt-out legislation is an important piece of the whole jigsaw to improving organ donation, transplant, and consent rates.

"We continually develop our regular training programmes in consent skills for our specialist nurses and work closely with bereaved families to better understand donation decisions.

"As with our partnerships with the DVLA, Passport Office and the NHS App, the change in the law is another tool in helping garner as much support for organ donation as possible and educate the public on why it is so important.
"It's important to remember that deemed consent was not introduced as a replacement for expressed consent. Many people still want to record their donation decision on the NHS Organ Donor Register.

"Families value this confirmation when supporting donation, making the decision a lot easier at an already very difficult time.

"The best way to ensure your organ donation decision is supported when you die is to declare it on the NHS Organ Donor Register."

Almost 90 percent of families supported their loved one's organ donation last year when they had expressed their decision to donate before their death, whether through the NHS Organ Donor Register or verbally to their family.