Cambridge’s Mac Elliott, 10, does not complain about having to take 35 tablets a day – he knows they are helping to keep him alive.
Mac admits it is hard to remember to take the tablets with him wherever he goes, but he says the best thing about having cystic fibrosis is that he gets to eat a lot of chocolate.
The tablets Mac takes daily are a pancreatic enzyme replacement which enable him to digest fats from food and gain some of the healthy weight that his body needs to fight off chest infections.
To maintain growth he has to eat 40 per cent more calories than a child of equivalent size and age, a task made more difficult by the fact he also has Coeliac’s disease and can only eat gluten-free foods.
Despite his disease Mac is a typical active kiwi boy whose bedroom wall is adorned with trophies that show his achievements and love of martial arts, hockey, rugby and fishing.
But he does find the trips to hospital hard.
“I don’t like going to clinic at Starship for bloods, X-rays and ultrasounds – and it’s always around my birthday too.”
One of Mac’s most impressive catches was a huge snapper on a trip organised by the Make-A-Wish foundation; Mac got to go fishing with ITM Fishing Show presenter, Matt Watson, and Grant Dixon, Editor of NZ Fishing News.
This is Bubbles Week – the annual fundraising and awareness week for Cystic Fibrosis.
As well as fundraising, the association also wants to raise recognition and awareness of this genetic condition that affects more than 500 New Zealanders and their families.
Mac is helping to raise funds during Bubble Week by selling chocolate fish at Goodwood School.
He and his sisters, Rowan, 12, and Peta, 6, have also been going door-to-door selling the fish to neighbours and friends.
Chief Executive of the Cystic Fibrosis Association, Kate Russell, said they also wanted to draw attention to the fact that in New Zealand people with CF do not have access to some drugs that are in common use in other countries.
Ms Russell says there is no open access to a breakthrough drug introduced overseas 10 years ago and proven to add years of life by slowing the progression of lung disease.
“When the breast cancer lobby pushed and pushed for Herceptin, the government listened simply because there were a huge number of loud voices calling for action, “ Ms Russell said.
“Our voice is small, but just because a condition is rare it isn’t an excuse for ignoring the needs of a very vulnerable group of people.”
John and Athalae say their son manages his challenges with maturity beyond his years. “It changed our lives completely but he has never known anything else, he is so relaxed about the whole thing it’s just amazing,” said John. Mac’s cystic fibrosis (CF) fills his lungs with thick sticky mucus, affects the functioning of his pancreas, and his ability to digest normal food.