Amber Fisher (left), who has cystic fibrosis, with mum Claire in 2017. Photo / NZME
Amber Fisher (left), who has cystic fibrosis, with mum Claire in 2017. Photo / NZME
For 15 years, the Fisher family have been tormented by cystic fibrosis.
After Amber Fisher was diagnosed with the inherited life-threatening disorder when she was 6 weeks old following a heel-prick test at birth, the Hawke's Bay family readjusted their lives dramatically.
Mother Claire Fisher said from that day on,"our lives changed forever".
Having spent her first birthday in hospital and years of appointments and medication, Amber is used to the daily struggles to live a "normal" life.
It causes the body to produce thick, sticky mucus which damages the lungs, digestive system and liver.
But with its hefty price tag, life-saving medication Trikafta - which is not funded in New Zealand - is simply not an option.
Amber Fisher (left) and mum Claire, pictured in 2017, are supporting Cystic Fibrosis NZ's annual appeal. Photo / NZME
Desperate for Trikafta to be made available, Claire said it would spare her daughter from time-consuming treatments and provide immediate and longer-term benefits for the health system, including reduced hospitalisations, a decreased burden of treatment while also deferring or preventing the need for lung transplants.
"Trikafta will change everything," she said.
"Once available in NZ for newborns diagnosed with CF, it will stop being seen as a terminal illness and will be managed similar to conditions like asthma."
Cystic Fibrosis NZ is calling on Kiwis to help "give a future" to those with the disorder by supporting its appeal this month.
The charity's annual appeal, which runs from May 1 to 31, encourages businesses, schools and organisations to fundraise and donate.
Cystic Fibrosis NZ chief executive Jane Bollard said appeal proceeds will be used for Trikafta access advocacy, to provide counselling and emotional support, financial help during hospitalisations and transplants and medical equipment to improve quality of life.
"Cystic Fibrosis imposes a heavy burden, with significant quality of life, social and economic impacts on people with CF, their families, whānau and communities," Bollard said.
The fact only half of those with cystic fibrosis reaching the age of 31 is a frightening reality, Claire said.
"It's especially shocking at the time of diagnosis. The only thing that helps us now is knowing that Amber is relatively well and I have faith that treatments addressing the cause will be available before Amber is in desperate need.
"It upsets me that there are so many hurdles and that being part of the Commonwealth has no benefit when it comes to accessing medications that are available in the UK."
Cystic fibrosis is the most common life-threatening genetic disorder affecting Kiwis, and is caused by a faulty gene passed down from a baby's mum and dad. One in 25 people carry the faulty gene that causes it, often without even knowing.
Claire said until diagnosis, her family were unaware the gene was present in either side of the family.
Since then, Claire and Andrew opted to use IVF with genetic testing to ensure their other children were less likely to jeopardise Amber's health or require extra energy and attention.
Their son, Isaac, doesn't carry the cystic fibrosis gene. But his mother said his life has had to take a back seat as his older sister requires more attention.
"Siblings of people with significant health issues are unsung heroes," she said.
