Max Johnson has pleaded for more organ donors to help save the lives of tots such as little Ethan Eaves.
The 12-year-old heart swap boy spoke as experts revealed the coronavirus crisis has led to a slump in transplants.
It comes as Max and Keira’s Law on opt-out donation is rolled out across England on Wednesday – after a four-year campaign by the Mirror.
Max said: “I would say to people today… don’t waste your organs when you die.”
Ethan, 14 months, has been waiting in hospital for a heart since August to replace his enlarged one.
The brave 12-year-old urged more people to consider becoming donors – on the eve of the opt-out rule bearing his name and that of the little girl who saved his life being adopted in England.
As doctors prepare to start ramping them up again, Max pleaded: “If you can save lives when you die, why wouldn’t you?”
One of those lives is 14-month-old Ethan, who has been waiting for a heart since August to replace his enlarged one.
The tot is hooked up to an artificial heart as mum Roseleila and dad Richard look on helplessly.
Max and Keira’s Law, which came after a four-year campaign by the Mirror for an opt-out rule, does not apply to under 18s and parents still have to give permission for doctors to use their children’s organs.
But Roseleila and Richard could face an even longer wait due to the coronavirus pandemic.
Some patients have had to be taken off the transplant list because the risk to them of receiving an organ is too high. No one who dies showing Covid-19 symptoms can donate.
Those who are able to be treated, such as kidney patients on dialysis, may be expected to wait longer for operations.
But those in dire need of transplants, who would die without an organ, will still have surgery.
Max was given his heart by the family of nine-year-old Keira Ball, who died in a car accident near her home at Barnstaple, Devon, in 2017. She also saved three others.
Loanna, 35, who was seriously injured in the crash that killed her daughter, said: “Max and Keira will be remembered long after we are gone.
“This law is so important. They really will go down in history, they will never be forgotten. That means so much.”
The couple’s charity, Inspired by Keira, is helping bereaved parents cope with the loss of a child.
And they worked tirelessly to help the 5,000 currently on the organ donor list.
Loanna and Joe also work hard to reassure parents who might consider organ donation if the unthinkable were to happen, and they were to lose a child.
Paul and Emma, of Winsford, Cheshire, wrote a book called Golden Heart, in which they vividly describe the ordeal of parents whose children are on the transplant list.
For Max, it was nine months on a ward at Newcastle’s Freeman Hospital looking out of the window, wondering if and when he might be saved.
Even at 10, he was thinking of others, admitting he might not make it. But he still believed the new law was right.
For five-year-old Frankie Lord, who was in the Freeman at the same time as Max and featured in the Mirror on Tuesday, it was a 21-month wait for his parents Sophie and Chris as they watched the agony of their little boy clinging to life.
Emma said: “What I say to people is how would you feel about organ donation if your child needed an organ?
“If one of your loved ones needed a transplant, would you accept a donor organ? I think that is the best way of looking at it… if you would take one, you should be prepared to give.”
Civil servant Paul added: “Max has never forgotten the children on the ward who did not make it.
“He remembered them when we decided to join the Mirror campaign almost exactly three years ago. And he still remembers them now.”
Max, who has a 14-year-old brother, Harry, has formed an unbreakable bond with Loanna and Joe and their children Bradley, 10, Katelyn, 14, and 15-year-old Keely – who he calls his “second family”.
Both the Johnsons and Balls paid tribute to Mirror readers, who backed our campaign to reform the organ law – which now assumes everyone is a donor unless they opt out.
Experts believe it will give surgeons 700 more organs to transplant annually, saving hundreds of lives each year. Thousands signed up to join the organ donor register, and petition Parliament for change.
It was backed by footballer Andy Cole – who received a kidney from his nephew Alexander Palmer – surgeon Sir Magdi Yacoub, The British Heart Foundation, Kidney Care UK, the British Medical Association and Kaylee Davidson-Olley, the first successful and longest surviving baby transplant in Europe after receiving her heart at just five months old.
NHS Blood and Transplant had a huge rise in the number of donors signing up.
Its medical director for organ donation, John Forsythe, said: “As the situation with Covid-19 is ever changing, so is the picture regarding donation and transplantation.
“Some units have made the difficult decision to close their transplant programmes for now. This to support the NHS in treating Covid-19 patients.
“Lifesaving transplants are still going ahead as long as clinical staff feel it is safe. Transplant teams will talk to patients and balance their need against the additional challenges of being immunosuppressed at this time and the challenges being faced within the NHS at this moment.”
Health Secretary Matt Hancock said: “Coronavirus has vividly reminded us that life is a precious gift, one that we must do all we can to treasure and protect.
“It’s why the new organ donor opt-out law, which comes into force today, is so important.”
How Mirror helped bring in donor law
April 2015
Teddy Houlston became Britain’s youngest donor, donating his organs after dying aged just 100 minutes. It led to more than 100,000 people signing the organ donor register.
December 2015
The soft opt-out system comes into force in Wales after a 2013 law change.
The Daily Mirror launches its Change the Law for Life campaign calling for legislation change in England too.
July 2017
Labour MP Geoffrey Robinson came up in the Private Members’ Ballot and chose to use it to change the law to presumed consent in England.
September 2017
We revealed that 457 Brits could have been saved that year if an opt-out system had been in place.
October 2017
Prime Minister Theresa May gave the bill government backing.
February 2019
The bill finally becomes law after passing its final hurdle in the House of Lords. A huge public information campaign begins to let people know that if they do not opt out, it is assumed that they consent to donate.
May 2020
The law comes in to force.
Transplants up after Covid-19 shutdown
By Health Editor Martin Bagot
Lifesaving transplants are being ramped up again as Max and Keira’s Law comes in to force on Wednesday.
Most operations had been delayed due to fears vulnerable patients might contract Covid-19 during surgery.
And health minister Lord Bethell has said that while NHS bosses had no choice but to impose the policy many organs had been “wasted” as a result. Care minister Helen Whately told the Commons yesterday “over 5,000 people in England are waiting for a transplant”.
She said: “During the peak of the pandemic, there were many days that there were no transplants.
“As of last week there have been 167 referrals, 11 donors and 38 transplants.
“We have a duty now more than ever to push ahead with measures that will reduce human suffering and help people improve their quality of life.
“That is exactly what this law does.”
The law presumes all adults in England agree to be donors unless they opt out.
Anthony Clarkson, of NHS Blood and Transplant, said: “We hope this will prompt all of us to consider whether or not we want to donate our organs.”
Fiona Loud, of Kidney Care UK, said it “gives a shining light of hope” to the hundreds needing a kidney transplant.
“Capacity and resource must be built back up so that precious organs do not go to waste.”
'Have that conversation for kids like my Ethan'
By Julie McCaffrey and Grace Macaskill
All day and night, Roseleila Eaves has her phone on full charge, the ringtone set to loud and always within easy reach.
Because if a call comes to say a donor heart has become available, 14-month-old son Ethan’s life depends on it.
The tot has been in Great Ormond Street Hospital since August last year and is hooked up to an artificial heart. All he knows is that the cannulas get in the way of his crawling practice.
He is blissfully unaware they are keeping him alive until a tiny heart transplant takes place.
His family, who have been warned the coronavirus outbreak means longer waits for transplant ops, are appealing for parents to talk about donation should the worst happen.
Roseleila, 34, from Luton, says: “I can only imagine how raw and devastating a conversation about organ donation could be when a parent has just lost a child.
“But NHS studies have found many parents have said in hindsight they would have agreed.
“Many young lives would be saved if those conversations were had now. Talk to each other and talk to your children if they’re old enough, so you know their wishes. Today, the day Max and Keira’s Law comes into force, marks 264 days since Ethan’s been on the urgent transplant list.”
Ethan was diagnosed with an enlarged heart in August 2018, seven months after engineer dad Richard, 37, had a transplant for a different heart condition.
He was born a healthy 8lb 10oz and when sent for a routine heart test because of his family background was given the all clear.
But on the couple’s first wedding anniversary on August 11, Ethan was rushed to hospital after falling ill and an X-ray found his heart was enlarged.
In a 12-hour op, Ethan was wired to a mechanical heart after his own began beating dangerously fast.
“Sadly, it’s not a cure and comes with a risk of blood clots,” says Roseleila. “He desperately needs the transplant. Every night when I leave him in hospital to return home to my husband and two older children, I become emotional and so does Ethan.”
Max and Keira’s Law does not apply to under-18s and parents still have to give permission for doctors to use their organs.
Before the pandemic, children waited an average 70 days for a transplant – compared with 29 for adults.
More than 100 kids in the UK need an organ transplant and 40 of them are waiting for a heart. The size of the heart is important, meaning a donor of a similar size is needed.
A young donor is their only hope. But for some, the call never comes.
Amelia Brown has been waiting for a new kidney since she was born eight years ago. She has serious renal problems caused by vacterl syndrome. A transplant is her only hope of enjoying simple childhood joys.
Mum Gemma, 37, of Sheffield, says: “Amelia stays positive by saying things like, ‘When I get a new kidney I’ll be able to jump really high’.
“She stays cheerful and positive and that helps me and my husband, Jason. The idea of the transplant never happening is unthinkable.
“That’s why we urge families to have the conversation about organ donation. People often avoid them because it’s too awful to think about.But for many parents of children on the transplant list, that’s the reality."
Follow Ethan’s journey on Instagram at @ethaneaves_2019
Campaigner's perfect birthday gift
By Warren Manger
Max and Keira’s law is the birthday present Christine Cox has dreamed of for 30 years.
Christine, 58 today, began campaigning to change the law after her brother Peter died of a brain tumour in 1989 aged 24.
Peter, inset, a civil engineer who ran marathons, told his family he wanted to donate his organs, which saved and transformed 17 people’s lives.
At the time there was no database to match donors with patients who needed a transplant, so Christine, of Wolverhampton, launched her lifesaving campaign with dad John and mum Rosemary.
The NHS opt-in donor register was launched in 1994 but they hoped an opt-out system would eventually replace it. Christine said: “This is the best birthday present I could have wished for.”
