“We’re gonna party like it’s 1999, that’s what will be playing as we leave,” says Linda Brash, twiddling the ends of the soft woollen purple scarf she’s been wearing since last week. It’s a comforter, a reminder of her son, Lee, who passed away at 1am last Thursday morning and his passion for the music of Prince. “We’ll have Purple Rain playing as people go into the church too.” She tries to smile but it’s as though her face has forgotten how to move the correct muscles.

Her husband, Alan, resplendent in a purple pullover at her side on the sofa of their comfortable Baberton Mains home, manages a laugh. “We want everyone to wear something purple to the funeral – we’ve had something on every day. It would be something Lee would have loved to see. We’ve even been told a friend who can’t be there because she’s on holiday will wear a purple bikini on the day.”

Coincidentally it was in 1999 when I spoke to Lee Brash. He was 23 and a young man whose life had – at times – been played out in the pages of the Evening News due to his battle with the life-shortening illness cystic fibrosis and his two-year wait for a vital heart and lung transplant operation.

We spoke because almost ten years on from his own surgery, he was still campaigning to ensure people were signed up to the donor register and to offer comfort to youngsters dealing with the thought of having another person’s organs in their body.

He was still taking 20 tablets a day – anti-rejection pills and CF medication – and despite having suffered a stroke the previous year, he was upbeat about how a transplant had changed his life. He was still here for a start, he laughed.

“It’s so much better to keep living and do all the things you weren’t able to do before,” he said. “I find it hard to understand why someone would want to die rather than have someone’s heart. They should take every opportunity which will help them live.”

It was that philosophy which drove Lee right to the end, say Linda and Alan. “He was so determined . . . always,” says Alan, 65. “He was an inspiration to a lot of the people who cared for him, from the CF nurses to the surgeons and the professors. He would take any opportunity to be well, to be ‘normal’. He was like that from the start.”

Born in 1976, Lee was the couple’s second child, and they knew he might have cystic fibrosis as both were carriers of the faulty gene which causes the condition. “We lost our first baby, Laura, at 23 months,” says Alan. “She had cystic fibrosis too and that’s when we discovered we were carriers and that there was a one in four chance of another baby having the condition.

“When Lee was born there were certain things that made us concerned and he went through a number of sweat tests to try and discover if it was CF. They were a bit unreliable then and he was nine months when the 
diagnosis came through.”

Cystic fibrosis affects the lungs and digestive system, so chest infections are common and the pancreas can become blocked by mucus, reducing the amount of insulin produced and stopping vital enzymes from reaching the intestines, causing malnutrition.

“He fought it all the time,” says Alan, Linda nodding in agreement. “He wanted to be able to do all the things that his friends did, but he was limited when it came to sport and physical things. Linda tried to make life as normal as possible but you couldn’t ignore it. He had to take a lot of medication from when he was a baby – we had to put powdered stuff on his food to help his digestion, so he was used to taking medicines, which helped for after the transplant.

“But at the back of our minds we didn’t know how long we had him for and the disease seemed to get worse the older he got.”

While Alan and Linda beat the genetic odds with the birth of their daughter, Pamela, who is not a CF sufferer – and neither are her two children – Lee was determined to beat his survival odds too and spoke to his doctor about a possible transplant when he was just 12.

“I remember his consultant saying to me ‘Lee’s asked to be put on the transplant list’. I couldn’t believe it,” says Alan, who works as a mechanical engineer in the estates department of Heriot-Watt University. “He’d never mentioned it to us before then, so we talked about it, and while we were very concerned because it’s such a huge operation, it was what he wanted to do.”

Indeed, 14 years ago Lee told me: “The only option was to have a 
transplant. It was my decision. I asked my consultant about it and I also discussed it with my parents. They were a bit doubtful at first but they knew that it was what I wanted. I was frightened but also excited.”

From that moment, Lee had to carry around a radio-pager in case organs became available and he would need to be picked up by a helicopter air ambulance to be flown to Harefield Hospital in Middlesex. His fellow pupils at Currie High rallied round to raise money for cystic fibrosis research and his cheeky smile was rarely out of the pages of the Evening News as his parents kept up the pressure for a donor to be found.

Finally in May 1990, when he was 14, the call came and his heart and lung transplant went ahead at the hands of world famous surgeon Magdi Yacoub – and his own healthy heart was donated to another child. “I think that was one of the main drivers for Lee,” says Alan. “Knowing that his heart could go to someone else who needed a transplant. He had to have both a heart and lung transplant to reduce risk of rejection.”

Linda adds: “After three months he got home and he said to me ‘mum, if I get ten healthy years of being a normal person I will be happy’.”

He had eight, most of which were spent carving out his career at East of Scotland Water and travelling, visiting Minneapolis – home city of Prince – New Zealand and Canada, as well as enjoying beach holidays. But at 22 he suffered a stroke.

“It was devastating,” says Linda. “They say it was unconnected with his condition and the operation, but we know of two friends of his who had the same transplant and both later died of strokes. He had been playing his guitar when it happened and he had the imprint of the strings on his face for about a week as he fell on top of it.

“It was a really hard time for him. He couldn’t play his guitar any more. He had paralysis down his left side. He was never really the same again, he did feel he’d been dealt a cruel blow. It just feels like I’ve lost him twice.”

Still, Lee rallied. He went to work for BT and moved into a place of his own. But five years ago came another blow – his anti-rejection drugs had affected his kidneys and he ended up on dialysis.

Dad Alan donated one of his kidneys, but it failed. So every night Lee would be hooked up at home to a dialysis machine – until 18 months ago when he began attending the ERI for haemodialysis three times a week.

“He moved back in with us,” says Linda. “It was all getting too much. But he was still driving, and still working up until a year ago. He was always a fighter. Up until a month ago he was still defying the odds. In December, he was back in hospital and they sent him home to die really, they didn’t think he’d see Christmas, but he did. He only missed one dialysis session because he said he knew once he couldn’t go that would be it.”

Alan adds: “Even when the nurses were coming in and there was talk of a special bed, he said ‘what for? I’ve got a bed already’. That was him all over. Lee was an inspiration. He helped the medical professional push the boundaries of treatment for CF kids and we’re proud of him for that.”

Alan, Linda and Pamela were all at Lee’s bedside when he passed away at 1am at the age of 37. “It was his wish to be here. He didn’t want to die in hospital,” says Alan. “He was such a fighter, but he couldn’t fight the inevitable. We have to thank so many people though who helped him and us over the years – the Scottish CF Service, the Western General, the Harefield, the renal nurses at the Infirmary . . . they’re all something special.

“We had Lee for a lot longer than we might have done. Everyone we speak to says the same about him, that he was inspirational. There are over 600 messages on his Facebook page. Everyday was a challenge to him, but he rose to that challenge everyday.”

Danger that can lurk within genetic make-up

CYSTIC fibrosis is a genetic disease which affects almost 10,000 people in Britain. One person in 25 carries the faulty CF gene and for someone to be born with the condition both parents must be carriers.

If both parents do have the gene, there is a 25 per cent chance of the child having the disease. There is also a 50 per cent chance of the child being a gene carrier and a 25 per cent chance they will not have the faulty CF gene.

CF is now diagnosable at birth through the Guthrie heel-prick test given to all newborns, but if a mum-to-be is thought to be at high risk of carrying a child with CF, then special antenatal screening can be done. A simple mouthwash test can determine if you’re an adult carrier of the gene.

The condition causes the body to produce thick mucus, which affects the lungs and digestive system in particular. But it’s a complex disease which can affect other organs.

Currently there is no cure, but through research and improved services and medications, the quality and length of life of sufferers has improved. In 1964 a child born with CF was lucky to live beyond five years, now more than half are expected to live beyond 41.