Alex Crichton is enjoying his final months at primary school before he heads off to secondary –thanks to two other children giving him the gift of life.
The brave 11-year-old, who has survived two open heart surgeries and two strokes, was born with a rare condition that left him fighting to stay alive as soon he was born.
He needed a donor valve inserted in his heart to keep it working at just two weeks old, and another to replace it less than a year-and-a-half later. Without them, he would not be here today.
And Alex, who was given just 48 hours to live, knows it was only possible because the families of two infants made the heartbreaking decision to donate their child’s organs and tissue to save someone else’s son or daughter.
The P7 pupil, from Westhill, Aberdeenshire, is now urging families to talk to loved ones about organ donation, saying: “It’s really important because it gives people like me the chance to live.”
His second donor valve is still going strong after more than 10 years – several years longer than expected – but Alex knows, as he grows, the valve will start to fail and he will need a new one.
The youngster has therefore thrown his weight behind an awareness campaign about the new opt-out law surrounding organ donation that was introduced in Scotland last month – something his mother Julie, 45, said was “long overdue”.
It means that everyone aged 16 and over is now considered a potential donor if they die in circumstances that would make it possible, unless they have recorded their decision not to be, though families will still be involved in the process. The change in the law does not apply to children, whose families will still be asked if they wish to donate their organs.
Miss Crichton, who was told Alex only had 48 hours to live when he was 17 months old, said: “I can’t ever thank the families enough for what they did. Someone had to say goodbye for me to keep my son; there are no words but thank you.
“It’s a brave and difficult conversation to have – to be talking about donating your children’s organs when you are losing or have lost a child. That’s why it’s important to talk to children about it, at age appropriate levels, of course, especially if they ask a question.
It’s all about making memories and thanks to that donor, he has a fantastic life.”
“It’s not an easy subject to talk about especially with a child but I have always been honest with him.”
She added: “He’s had nearly 11 years out of the valve transplant, but that is going to fail at some point because it doesn’t grow with him.
“It could be this year, next year or in two years, we’re just waiting for that day, but he has done amazing to get as long as he has with it.
“It’s all about making memories and thanks to that donor, he has a fantastic life.
“This new opt-out law is long overdue. Everyone has it in them to save a life and I keep saying ‘you can’t take it with you’.
“Hopefully it can help save more lives.”
First op just two weeks after he was born
Alex was only two weeks old when he needed his first nine-hour open heart surgery to insert a donor valve after he was born with truncus arteriosus.
The rare condition affects fewer than one in 10,000 children and left Alex without a working pulmonary artery.
Mum Julie was told the procedure would last him five to 15 years. But when the valve started to fail less than a year later, Alex was put on the emergency list for a new one.
The operation went ahead when he was 17 months old. But just 24 hours later, scans showed Alex had suffered two strokes, affecting both sides of his brain.
Devastated Miss Crichton was told there was little chance of Alex making a full recovery and that he might never walk or talk again.
She said: “It was devastating. He went into hospital being able to walk and talk and after the stroke he couldn’t even sit. The doctors said he may not even recognise me again.”
Alex still has weakness in his left arm and needs regular therapy to strengthen the muscles in his legs but that has not stopped him enjoying a normal childhood. He even took part in the martial art Choi Kwang-Do.
For more details about the change in law, or to record a donation decision, visit organdonationscotland.org or call 0300 303 2094.