Rachael Moffat was a quiet little girl, preferring to stay indoors and do colouring while big brother Stephen charged about playing football.
Her parents, Andy and Mary, thought their youngest child was just a “girly girl”.
But when Rachael started school and kept falling asleep, they began to worry.
It was the start of an awful few years for the Moffats. As doctors investigated the cause of Rachael’s fatigue, older brother Stephen had a series of collapsing episodes.
He was diagnosed with Long QT syndrome, a rare condition causing abnormal heart rhythms, and it was also discovered that Rachael was in severe heart failure.
One fateful day in August 2007 the Moffats found out why.
Rachael, then seven, and Stephen, 11, had a rare heart condition called restrictive cardiomyopathy, where the walls of the heart are rigid, meaning the organ struggles to stretch and fill with blood.
Both would need heart transplants.
Two weeks after being put on the transplant list in November 2007, Stephen was given a new heart at the Freeman Hospital in Newcastle.
“He was very lucky,” says mum Mary, 54, from Cleland near Motherwell. “But it was a huge shock to suddenly realise the enormity of what had just happened.”
Doctors had hoped that Rachael would be spared surgery until she was older, but within weeks her health deteriorated and she too received a life-saving transplant at the Freeman in August 2008.
Just two years later came another huge blow for the family.
Dad Andy, who’d suffered from heart problems since childhood, was also diagnosed with restrictive cardiomyopathy.
“His condition got worse and they didn’t know if it was down to stress over the children,” says Mary.
“He underwent a transplant but unfortunately he didn’t make it.” Andy was just 45.
Thankfully, Rachael and Stephen remained in good health for several years. But in October 2015 when Rachael was 14, she became unwell again.
She was admitted to the Royal Hospital for Sick Children in Glasgow suffering arterial fibrillation, an abnormal heart rhythm, and received treatment to regulate her heartbeat.
However, she continued to feel very poorly. “I had a lot of pain in my chest, I was tired, I felt sick all the time and couldn’t eat,” says Rachael.
By the end of November, despite her loss of appetite, she’d gained weight, a sign of fluid retention which mum Mary knew all too well was a red flag.
“The last thing I remember is being in an ambulance,” says Rachael.
She doesn’t remember anything else until she woke up in Newcastle at the end of January 2016 to learn she’d been given a second new heart, and had been on a ventilator for over a month.
Although the transplant was a success, Rachael still had a tracheotomy and
dialysis due to kidney damage.
A kidney transplant was on the cards until an unexplained improvement stopped the need for dialysis.
Throughout all their trials, however, there has been a constant for the Moffats: The British Transplant Games, run by charity Transplant Sport.
The annual event has been a big part of the family’s life since Andy took Stephen to his first games in 2008, and the whole family went along in Sheffield in 2009.
“Andy liked to meet loads of people and hear their stories,” remembers Mary, adding with a chuckle, “He was the type of person who’d walk into a shop and start talking to the person next to him. He was always interested in everyone and how they were doing.”
The Moffats took a break from the games after Andy died.
It was Rachael’s idea to return in 2014.
“I think I was just a bit bored!” she laughs. “I remembered really enjoying it.”
Stephen, now 22, competes in 10-pin bowling. Despite keeping well since his transplant in 2007, he says that sport still takes it out of him.
“I play football with my friends but I do feel tired afterwards,” he says.
“I really feel it, more the next day than when I’m doing it.”
Incredibly, Rachael returned to the games in 2017 in North Lanarkshire, switching from table tennis and badminton to less strenuous but still challenging archery.
“I go to an archery club every week and got a new bow recently. I’m in the adult category now, which means I shoot 30 meters instead of 15 – I think I’m getting to grips with that.”
Following this year’s Games in Newport in July, the siblings will be representing Team GB at the World Transplant Games which are held in Newcastle and Gateshead in August.
“Stephen’s been off practising all the time because he wants a medal,” smiles Mary.
Stephen adds, “I’m just going to try to do my best.”
Two days after returning from the World Games, Rachael, who has missed months of school, will start a life skills and employability course at college.
She’s also looking forward to volunteering at her local St Andrew’s Hospice shop and hopes to write her story.
Meanwhile, Stephen has finished a degree in computing and is now ready to find a job.
There are currently more than 6,000 people on transplant waiting lists, with three dying every day.
With the Organ Donation Act – known as Max and Keira’s Law – coming into effect next year, British citizens will opt out of, instead of into, organ donation.
It’s predicted that the new law could save 700 lives every year.
Mary urges everyone to have the difficult conversation with loved ones about their wishes.
“My kids wouldn’t be here without their donors,” she says.
- This year’s British Transplant Games take place in Newport, Gwent, on July 25-28. The World Transplant Games are in Newcastle and Gateshead from August 17-24 with 2,000 athletes from around the globe taking part, including 330 competitors representing Team GB. For details go to transplantsport.org.uk