Mrs May could save so many young lives
TRANSPLANT SURVIVOR CALLS FOR CHANGE IN DONOR LAWS
WITH a grin from ear to ear, transplant survivor Max Johnson headed home from a Newcastle hospital with a renewed plea to change the law on organ donation.
The nine-year-old was “so excited” after 249 days of treatment. But he also remembered those children who had lost their lives as he waited for his new heart.
Max spent more than eight months on the Children’s Heart Unit at the Freeman Hospital with a left ventricular assisted device (LVAD) keeping him alive.
As he suffered with an enlarged heart, he saw other children come in, receive donor organs and leave, and tragically, those who did not make it.
He urged Theresa May to think of them and back a new ‘opt out’ system where everyone is presumed to be a donor, rather than being required to carry a card.
“Why can’t Theresa May just change the law? It is so simple,” he said as he packed his bags at Scott House, the ‘Home from Home’ provided by the Sick Children’s Trust at the Freeman.
“I would be surprised if the law is not changed – why would you want to bury your organs with you when they can save somebody?
“You are just letting them go to waste.”
Max fell ill on December 7, 2016, and spent almost a month in Manchester’s Children Hospital before he was rushed to the Freeman to have the LVAD fitted.
Parents Emma and Paul, of Cheshire, suffered the agony of one heart being found which proved not to be a match, just days before the transplant was carried out last month.
Since then they have seen their son transformed.
He has rosy cheeks, a healthy appetite and boundless energy.
But even as he set off, Max remembered those children who had not made it home.
“I was in hospital for such a long time that I saw people who did not get their organs,” he recalled. “I remember a little girl called Ivie.
“Sadly she did not make it. I saw another little girl called Ella who was down on the ward.
“Then she got canulars put in and she was taken to the High Dependency Unit. I
“I started to worry a little bit because she was on oxygen.
“I thought she must have got better. But she went upstairs, and never came back. If Theresa May did change the law, there would be more organs for children like them. She would be saving loads of lives.”
Three-year-old twin Ivie Boulton died in her parents’ arms waiting for a new heart, five weeks after being diagnosed with a rare form of flu. She was first taken ill on January 25. Parents Scarlett, 30, and Gavin, 35, took her to a GP in Gloucestershire, before she was rushed to the Freeman, where she died in March.
Eight-year-old Ella Dee lost her brave fight last month, hours after parents Alice Holton and Darren Dee took the decision to turn off her life support machine as she waited for a second heart transplant.
Through tears Alice, of Middlesbrough, told the Mirror: “Ella is proof there should be an opt-out system.”
Max’s mum Emma says the nerveracking experience of waiting for a donor organ has changed the family’s perspective on life.
And he sent his donor family ‘the biggest thank you in the world’ as he said goodbye to the medical team who had kept him alive.
With a winning smile, he said: “It is a dream come true going home. It has been a bit like a holiday since the transplant because I have been able to go out.”
To become a donor, visit organdonation.nhs.uk