Daily Mirror (Northern Ireland)
They thought Max had asthma... that was a first peek over the top of the rollercoaster big drop. In reality we are fighting against terminal decline
a visit to see his brother. “It was my first trip to London – Buckingham Palace was really, really cool.”
For Emma and Paul, our crusade for Max’s Law, backed by 10,000 people, is the latest stop on an emotional journey since their son’s diagnosis.
Paul recalls: “He first had problems breathing in September, when we took him to hospital.
“They thought it was asthma. Looking back now that was the start of it. That was the first peek over the top of the rollercoaster’s big drop.”
That drama came little more than two months later with the diagnosis.
Emma says: “You have the shock factor for the first two months. I had just started a new job but I couldn’t face work. It is unreal for a while.
“You have to find certain times to call. If I ring Paul at an unexpected time, I say, ‘It’s not the gift’, meaning that it is not about the transplant.
“Paul rang me once and said, ‘It’s not a heart’. But I thought he said, ‘They’ve got a heart’. I jumped out of my skin. So we have changed it to ‘the gift’ now which is what it is: the gift of life.”
The family relies on the Sick Children’s Trust to provide a flat so they can stay at Max’s side in the Freeman.
Emma works on Mondays and Tuesdays. On Wednesdays, she does a swap with Paul, who heads home to look after Harry 180 miles away in Cheshire. After so long at the trust’s Scott House they have seen other parents leave as their children received transplants as well as the unspeakable pain of little ones who have lost their lives waiting.
Emma still gets upset thinking of them...
“That is the hardest thing about this situation,” says Paul. “The reality is that we are fighting terminal decline.
“There is a yearning for Max to get that chance to be strong. You want to have some semblance of a normal life again.
“We meet people who have survived 30 years after a transplant. It is amazing.”
Emma admits they take nothing for granted. “People see the transplant as a silver bullet but we know that is the not