WHEN Vilma Taylor’s seven-month-old baby Brad was diagnosed with cystic fibrosis in 1964, the specialist assured her he’d be dead before long.
“They said when he was born that five years of age would be his limit,” Vilma, now 86, says. “The specialist said it was a waste of time treating these children, they all die.”
But Brad Taylor, helped by three strong women and an Australian-first heart-lung transplant, defied that prognosis to become South Australia’s most prominent advocate to find a cure for the killer genetic disease that clogs the lungs and digestive system with mucus.
He died on January 5, at 53, which sounds too young but was really a great victory. Even today, life expectancy in South Australia for the six to eight children born each year with cystic fibrosis is only around 37-38 years.
“There was too much pain at the end, in hospital,” Vilma said, after the funeral service for her son this week.
“But he said, ‘don’t you turn the life support off. I’ll keep fighting’.”
It was what he’d always done. But he didn’t fight alone.
Vilma battled to keep him alive in the early years. Dr Helen Caldicott — the famous antinuclear campaigner and Adelaide doctor — gave him lifesaving intensive treatment at the age of seven. And just over 10 years ago, he married the love of his life, Kaye.
Then there was the landmark 1990 heart-lung transplant in Melbourne that doubled his lifespan and saw him dubbed a medical marvel.
“After 25 years of being stuck at home, it was like being reborn,” he said at the time.
Suddenly he was able to play sport, skydive, run with the Olympic torch, and his new livewire status gave him a profile to push the cystic fibrosis cause.
“Brad was a captivating speaker, and he could share personal and uncomfortable things with people,” says Julia Langrehr, executive officer of Cystic Fibrosis SA. “But he was so vibrant and positive that they could understand the health issues he dealt with, without feeling pity. He was a real fighter.”
But even with his grit and his mother’s determination, he wouldn’t have made it out of childhood without the help of a young Adelaide medico Dr Helen Caldicott, who recalls when she first saw Brad, “he was clearly on the way out”.
The Taylors were lucky. Dr Caldicott had spent time at Harvard and had seen the latest treatments the Americans had developed. Australia needed to catch up. There were figures showing half of patients with cystic fibrosis in Adelaide died at four years, compared with 17 in American clinics.
After some hiccups, she helped win support for a cystic fibrosis clinic at the Adelaide Children’s Hospital.
“He was blue (from lack of oxygen),” Dr Caldicott said of her first meeting with Brad.
“He couldn’t walk. And he was seven. So I met his mother and father and we started a mist tent (the moisture helps make the mucus easier to cough up) and physiotherapy twice a day and antibiotics, and he improved a lot.”
He was strong-willed and obstinate, and would only eat a few foods, including sausage rolls, and Vegemite.
A lifelong bond was formed. “They both loved one another,” said Vilma.
Dr Caldicott, who spoke at Mr Taylor’s service, said he was “the most remarkable patient I’ve ever had”.
But when her work took her to the US, she began to worry he was running out of time.
“He got to 21 and he was really sick,” she said. “And I saw him at the Royal Adelaide. And I walked away in tears because I thought it was the last time I’d see him.”
Again, Mr Taylor defied expectations, fighting on to 25 when he received what Dr Caldicott believes was the first heart-lung transplant in Australia for a cystic fibrosis patient.
It was a “domino” transplant, where his heart went to a female patient, and he picked up the heart and lung of a woman donor.
He went in blue, his mother recalled, and within hours of the operation, was pink. His life turned around.
He finished more than 15 City-to-Bays, skydived into a Crows match, and “lost” his second heart to Kaye, a schoolteacher, who says she fell in love with his enthusiasm and positive outlook.
What drove him? “Life,” Kaye says. “He loved life so much he’d do anything to extend it as long as he could. It was a remarkable achievement — he lived 27-28 years post-transplant, so he doubled his life.”
The pair met when he was well, but it was not long before other health troubles cast a shadow.
In 2005, he had kidney failure, from the many drugs he’d needed to take.
The following year he had a stroke. “The doctors were adamant he wouldn’t survive,” Kaye said.
“He spent three months in Royal Adelaide, three months in rehab. Completely paralysed in the left side, but he learned to walk again.”
He treated the new problems as hurdles to leap over.
“I married him after he had a stroke,” Kaye says. “It was always going to have challenges, but I was committed, stood by him, and helped him fight as best I could.”
They travelled to the world transplant games in Sweden, in 2011.
Then they went to Paris, and travelled around Australia. Photos at Disneyland show him smiling like a child.
But two years ago, his mother said, he started having falls. He broke ribs, shoulder, ankle, toes. He hadn’t walked in the last 12 months. He had cancer too, and lost his nose. The cancer spread, and last December gastrointestinal issues put him back in hospital.
Kaye said the radiation therapy from the cancer took the last of his physical reserves.
With so many complications, she is not certain what killed her husband but thinks it was renal failure.
“It was just time, his time was up,” she said. “He’d had enough thrown at him and his body wasn’t willing to cope with anything anymore.”
The three women were together to farewell him at the service. He would want them to keep talking about his life and the disease which six to eight South Australians are born with each year, Kaye said.
“We … miss him terribly,” she told the 200-plus mourners this week, “but I know he’s happy in heaven, celebrating a totally healthy body for the first time ever.”
Originally published at: http://www.adelaidenow.com.au/news/south-australia/sas-medical-marvel-who-cheated-death-defiant-to-the-end/news-story/e85ec8ef8609c52f99f8096107cac854