A family from Harrogate has faced the most traumatic of ordeals after both sons were diagnosed with a deadly heart condition.
Stuart and Alan Gardiner, now aged 37 and 32, were both born with a faulty gene which left them with enlarged hearts - a devastating and potentially fatal problem.
The brothers, diagnosed within six months of one another, were both put on the list for a lifesaving heart transplant.
But medical statistician Stuart, living in America, was treated within months. And musician Alan, who now carries a battery everywhere to help pump his heart, is still waiting for news.
“We sit and we wait,” said their mum Liz, a volunteer at Bilton Library. “That’s the hardest part.
“I’ve seen what happens without a transplant. My dad died, of the same genetic condition, when I was 17.
“I’ve seen the boys being as ill as he was - but then there was only one outcome. Now we have hope, and we have choices. We just have to wait.”
Stuart and Alan, born and brought up in Harrogate along with their sister Susan, took different paths after their education.
Alan, who went to St Peter’s Primary School, Rossett, and Harrogate Grammar School, is an avid musician who took up a career as a jazz drummer and teacher in Norfolk after playing with the Tewit Youth Band.
His brother Stuart, who had gone to Belmont Grosvenor School, went on to read mathematics at Cambridge, completing an extra year in medical statistics.
A keen traveller, he visited Nepal and India, climbed to Everest base camp, and did charity work with Operation Raleigh in Chile.
And his career path, after a PHD at Nottingham Trent, took him to Portland in Oregon, USA, where he works in medical statistics.
It was while he was there, in 2006, that he first began having heart problems.
“I got a phone call saying he was in hospital with an enlarged heart,” said Liz, now 71.
“But his consultant didn’t seem to be too worried, he said it was a viral thing and that it would take him about six months to recover.”
But less than six months later, Alan got sick.
“He had some sort of cold,” said dad John, 72. “He had been home a few days when he said he couldn’t cope any more.
“We took him down to the out-of-hours service at Harrogate Hospital. The doctor took one look at him and said ‘you’re coming in’.”
Alan too was diagnosed with an enlarged heart.
“Suddenly everything changed,” said Liz. “All the bells started ringing. This was not a virus.
“My dad died of an enlarged heart, but we’d always been told that was down to a childhood illness. We never made the connection.
“Now, it seems, this was hereditary. And I carry the gene.”
In 2010, Stuart took a turn for the worse and was fitted with a ‘VAD’ - a battery pump attached to his heart. Then he was put on a transplant list.
“He was told that in Oregon it was about a three month wait,” said Liz. “He did have to wait longer - nine months - but that’s because he turned down two hearts as they weren’t right.
“He’s 6ft 6in, a tall man, and young. They wanted a strong heart.”
Stuart had the transplant in the March. Within weeks, he was on the road to recovery.
“He was married five months after his heart transplant,” said John, a retired civil servant. “And he led the dancing. They were practically jiving.”
Liz, smiling, adds: “You wouldn’t now know there had ever been anything wrong. He got a good heart and he has been given a chance.”
But then younger brother Alan, who had been struggling, took a turn for the worse. He was fitted with a VAD last May, and told he needed a new heart straight away.
“He went really downhill,” said Liz. “The VAD wasn’t as successful, he still carries it around. And, in my mind, he’s going downhill. That battery is keeping him going.”
Alan was put on the waiting list for a heart transplant last Autumn. And he has been warned that it could be up to a two year wait.
“He can’t work,” said Liz. “He’s trying to keep himself up, keep positive.
“He was married in August last year, and his big goal was to play a piece at the party. As he stood to play, you could hear a pin drop, everybody held their breath.”
Dad John adds: “It brings a tear to my eye even thinking about it now. But the applause when he finished - you could have brought the roof down.”
It’s hard for the family, said John and Liz, to watch Alan deteriorate as Stuart gets better.
“There’s a big difference in care between the States and here - some better, some worse,” said Liz. “But the difference between having a transplant and being stuck, as Alan is now, is huge.”
The Gardiners contacted the Advertiser series after reading about our organ donor campaign.
Urging people to sign up - and talk about it with their families - they say such a move can help save a life like Alan’s or Stuart’s.
“The hardest part is that we are waiting for a fit, healthy, young man, of about Alan’s age, to die tragically, so that Alan can live,” said Liz. “It’s hard to get your head around that.
“It can’t be easy for a family to say yes, when they have just lost a loved one. But we see the other side of it. And at least, in a way, you are saving a life.
“I feel for the families but I wonder what would happen to someone who is adamant they would never consider donating. Would they accept an organ?
9 - people have died in the Harrogate district while waiting for an organ transplant in the last five years.
23 - more people waiting for a transplant
7 - people have had their lives transformed by a transplant in the last year - with seven more having their sight restored by a cornea transplant.
Are you affected by organ donation? Or have you signed up to the Organ Donor Register? Share your story by emailing firstname.lastname@example.org or call 01423 707509. To join the NHS Organ Donor Register, visit www.organdonation.nhs.uk, or call 0300 1232323.