Claire Fisher along with daughter Amber who has cystic fibrosis. Photo / File
Claire Fisher along with daughter Amber who has cystic fibrosis. Photo / File
Napier's Claire Fisher knows what it's like to have a family member with cystic fibrosis and she and her son are participating in "Sweatember" to fundraise and raise awareness.
"Sweatember" challenges Kiwis to commit to any sweaty activity throughout September to get fit and raise money for New Zealanders livingwith CF.
Run by Cystic Fibrosis NZ, the campaign aims to raise funds for support services and better access to life-saving medications that will help give a brighter future to Kiwis living with CF.
Claire's daughter Amber was diagnosed with the inherited life-threatening disorder when she was six-weeks-old, following a heel-prick test at birth.
Amber is now 15, and Claire said while CF impacted the whole family, the impact on siblings largely went unnoticed.
"From the moment a person with Cystic Fibrosis (PWCF) is diagnosed (usually at birth through the heal prick test) a family's life is turned upside down," she said.
"With many decisions we make Cystic Fibrosis is considered. A recent example is catching the bus to high school."
CF is a serious and ultimately terminal genetic condition which effects the lungs and digestive system.
People with CF endure a demanding and time-consuming daily regime of lung clearance and medication, together with regular medical check-ups and, over time, increasingly frequent hospitalisations.
Claire said during Amber's first year at high school, 2019, the teen got quite sick.
"Covid and the changes NZ made in 2020 meant sickness stayed out of our house for most of autumn and winter.
"It also made us realise that a crowded school bus was likely the main reason behind Amber's constant and awful viruses, sinus infections and strep throat."
Claire Fisher along with son Isaac (12) are participating in Sweatember to fundraise for CF. Photo / Supplied
Claire said Amber not being able to use the school bus meant sacrifices for the whole family, including Amber's brother Isaac.
"We also need to make sure that neither he or his friends bring coughs and colds into our home because they could lead to Amber requiring hospital treatment."
The drug Trikafta, and other treatments in the pipeline overseas have given the family hope for a better and brighter future for Amber and the other people with CF.
"However, I think in order to get access to these life-saving and life-changing treatments, the NZ government and Pharmac will need to change the rules.
"My understanding is that current legislation will make it very difficult for Pharmac to approve the funding of Trikafta."
She said in the long run she believed Trikafta will be funded and will save the government money.
"It is certainly the right thing to do. This wait, which is too long for some people to survive, is simply cruel."
Claire said she didn't want their cause to be forgotten, and that's why she got involved with Sweatember.
"We need to keep reminding people how important this is and that our community will keep yelling from the roof tops until the government and Pharmac give us what our people need."
So she decided to break out her sneakers and put them to use.
"I chose stairs because it didn't matter if it was day or night, wet or dry, I could still get it done.
"Isaac, 12, either felt sorry for me or inspired and he decided to join me in getting fitter.
"Sometimes he joins me on the stairs (and shows me how much fitter he is than I am) and other times he does his own thing like running on the treadmill."
So far Claire had completed 3040 stairs (190 flights) "not many for some but a lot more exercise than I would have otherwise done" and has a target of $500.
