I've created this page because I want to make a difference to people living with Cystic Fibrosis. My own son Jesse who is now 22 lives with Cystic Fibrosis so it is a cause close to my heart. Each morning Jesse starts his day with tablets.
He swallows about 40 to 50 every day - there are more if he needs antibiotics.
They are part of his daily routine of medication and physical therapy required to stay as healthy as he can while living with cystic fibrosis.
Cystic fibrosis (CF) is a rare genetic disorder which affects many organs, including the lungs, by clogging them up with a thick, sticky mucus. All of which affects ability to breath, put on weight and causes decreased life expectancy.
Quite often people are not aware that Jesse even has a health condition. Other than he coughs a lot and is slight of frame, you would think he’s just a normal healthy young man. They never see him at his worst so assume he’s fine. People misunderstand the true impact this condition has on one’s life due to outward appearances.
Jesses lung function at best only reaches up to 70 per cent of what it should be, and at worst can deteriorate to around 34 per cent, which at that level we were given a 2-year life expectancy by the doctor.
Struggling to gain weight is another symptom of cystic fibrosis as the pancreas does not metabolise fats due to the sticky secretions covering it. A high calorie diet is required to just try and maintain a normal weight and only the correct amount of enzyme tablets taken with meals allows full absorption of nutrients and calories. If this balance isn’t mastered weight loss is inevitable – it’s a bit of a science but Jesse has become a pro at this after medicating himself over the years!! Jesse also has a permanent feeding tube inserted into his belly button which he hooks himself upto overnight as another means of getting extra sustenance while he sleeps.
"My son inspires me to be a better person. He never complains about his lot in life, he just gets on with living it. He is driven, intelligent, kind and oh so funny. I am in awe of his motivation to fulfil his dreams with a positive attitude, rather than playing victim to his condition.
I have taken on the challenge of Ironman 2018 and used it as an opportunity to raise funds along the way. During the event I will swim 3.8kms, cycle 180km and run 42kms totalling 225.8kms. Please help me by giving whatever you can using the 'Give Now' button. All donations kindly received so Jesse and other CF sufferers like him may benefit from all the good work that Cystic Fibrosis NZ do.
All donations eligible for tax credit in New Zealand.