David Donohue, 35, and Chantelle de Kort, 31, shared a unique sibling bond. Photo / Supplied
David Donohue, 35, and Chantelle de Kort, 31, shared a unique sibling bond. Photo / Supplied
No one in the world can understand David Donohue's condition quite like his younger sister.
The Wellington pair suffer from cystic fibrosis, a genetic disease that progressively attacks the lungs and digestive system.
This weekend is the one-year anniversary of his life-saving lung transplant but the pair are still hoping an expensive "miracle drug", that could prolong their lives, will also be funded in New Zealand.
Chantelle de Kort and David Donohue were both diagnosed with cystic fibrosis at birth. Photo / Supplied
Donohue, 35, and his sister Chantelle de Kort, 31, were diagnosed at birth. The life expectancy of people with CF in New Zealand is in the late 30s, but if Trikafta was funded, de Kort says they would be able to think about retirement.
"We spent our time in and out of hospital growing up, trying to keep up with the other kids but also having an illness and trying to keep well too," de Kort said.
"We were in and out of hospital doing nebulisers every day, physio every day that takes about an hour and a half, morning and night."
Sufferers will experience declining lung function throughout their lives, to the extent many eventually need a transplant.
The condition, which affects more than 500 New Zealanders, causes the lungs to be filled with mucous, leaving the airways smaller and the lungs susceptible to infection.
Last December David Donohue had a lung transplant that saved his life. Photo / Supplied
Donohue said the pair were close, connecting every day over their shared illness.
"It's good to have someone that knows what we're both going through, to talk and compare."
Cystic fibrosis is genetic - one in 25 people carry the gene - but the siblings' parents were unaware they were carriers of the condition until Donohue was born. The siblings also have children who were free of CF, but would be carriers if they decided to have children one day.
It's been a year since Donohue's transplant. When he was admitted on December 5 last year, he had less than a quarter of his normal lung capacity and weighed just 48kg.
Because of the risk of infection, the siblings could not see one another while Donohue awaited surgery.
Before his lung transplant, David Donohue had less than a quarter of usual lung capacity and struggled to walk to the letterbox. Photo / Supplied
Although having a chronic illness put them at much higher risk during the coronavirus pandemic, the lockdown, falling in Donohue's recovery period, was oddly convenient.
De Kort said the pandemic had also made people realise what sufferers of CF did every day to protect themselves from infection.
"We were wearing masks and hand sanitising years ago - this is not new for us," she said.
"And I've always kept away from sick people, so this has probably made people realise more what people with CF go through every day."
De Kort says her brother had always been the more unwell of the pair and she hopes she will never need a lung transplant.
Trikafta, from Vertex Pharmaceuticals, was her best chance at avoiding the same fate.
"It's like a miracle drug," she said.
"It helps about 90 per cent of people with CF and it's increasing people's lung function and increasing their energy levels, quality of life - women are able to have kids naturally."
Vertex plans to apply for Pharmac, the government's drug subsidising agency, to fund Trikafta in New Zealand.
Pharmac operations director Lisa Williams said they were yet to receive an application from Vertex, as the company was "still considering how best to do this".
"Pharmac can, and will, move quickly to fund new medicines that show significant health benefits," Williams said.
Cystic Fibrosis NZ has decorated trees at Wellington Airport, alongside a petition calling for Pharmac to fund the drug.
The organisation understood an application would be made soon, and wanted to have a show of support ready to present to Pharmac.
Christmas trees at Wellington Airport were decorated by photos and stories of CF sufferers. Photo / NZ Herald
Trikafta costs roughly $470,000 a year per patient.
"This is a huge drug, it's the closest thing we've got to a cure and all we want for Christmas is that drug here in New Zealand," de Kort said.
While they waited for the miracle drug, the siblings and their family celebrated Donohue's good health. Since his lung transplant he had put on 20kg and his lung capacity had returned to 70 per cent.
"It's amazing, it's like a whole new world now. I can do everything," he said.
"A year ago I was breathing at 20 per cent and walking to the letterbox was a struggle, and now I can walk up the Wainuiomata Hill without stopping or getting tired."
