Then I got a phone call from my CF nurse She told me I had been approved for the Managed Access Programme for Trikafta. Two days later I took my first dose.
We were so relieved that it was CF, we were worried that she wouldn't recover from her chest infection and collapsed lung. CF meant that she could recover and even be healthy with the right treatment.
I want nothing more than to grow old with my wife, and my beautiful daughter Jessie.
It is a constant juggling act between trying to “normalise” Madison’s life and keep her safe and well.
We think it's important to live your life as normally as possible and don't let CF hold you back. As soon as you start putting them in a bubble that's when things can change.
When Amber was a baby 13 years ago, the CF nurse told me that people with CF are special. She said she didn’t know if it was due to what they went through or whether it was nature’s way of balancing things out.
Pip Stocking's son Hayden has CF. Now Pip is on a mission to help raise awareness of CF among Maori.
Tailen was born much smaller than my other 3 children, he didn't feed properly and I was forever changing his nappy.
My hopes for Tayler are the same as they are for my other children. I want them to live long, happy and healthy lives.
My life hasn't taken the usual path but I do live it to the full. I like to think anything is possible.