Harry's fight will move you to tears
Living within the shackles of cystic fibrosis is pretty tough when you are 4.
Harry Ensor has a condition he can't pronounce, yet he is old enough to know that he is different from other little boys.
Harry has to swallow up to 20 pills a day, endure a nebuliser and physiotherapy ritual every morning and night, and he often struggles to keep up with his baby sister.
He treats hospital admissions like they are "camping trips".
Every time he eats, Harry must swallow an enzyme pill to help him absorb fats. He calls the pills his "enzies".
"Do I have to have them forever?" the 4-year-old recently asked his mother.
"Yes, you will," Charlotte Ensor, 35, replied.
Harry is already "making up cunning wee excuses" for his illness. For example, when he gets tired running around with his sister outside, he will come in and say, "It is a bit too windy for me out there".
Watching children live with cystic fibrosis (CF) is just as hard on the parents.
Ensor and her husband, Guy, 40, found out Harry had the genetic lung disease when he was 7 weeks old.
"I initially felt quite angry and upset, but then you learn to accept it. It is almost like grieving, but grieving for what you have not yet lost," she said.
"Pretty soon after we just decided that's the hand we have been dealt and that we were just going to raise him as normally as possible," her husband said.
The couple were advised not to Google the condition or read about it "because it is too depressing".
CF has no cure and it is not known how long Harry will live.
"Not knowing how long we will have him for is the hardest part. Is he going to die when he is 10 or when he is 20? Is he going to outlive me? You just don't know," Ensor said, watching Harry inhale a saline solution through his nebuliser.
Infants born with CF 70 years ago would have been lucky to live beyond their first year, but as science and technology have progressed, the median life expectancy has increased to 37.
CF affects several organs, especially the lungs and pancreas, by clogging them with thick, sticky mucus. It can cause shortness of breath, a chronic cough and repeated chest infections.
Harry uses a nebuliser to break up the sticky mucus that forms on his lungs and his parents then do "vibration physio", patting his chest and back to try to dislodge it, for about 20 minutes twice a day.
"He has been poked and prodded since he was 6 weeks old and is incredibly compliant now," Ensor said.
There are only 50 Canterbury children who have the disease.
The Ensors are sharing Harry's story in the hope of raising awareness of the disease as they are tired of "going through the whole nine yards of explaining what it is" every time they meet someone new.
Ensor and her friends held a fundraiser for the Canterbury branch of the Cystic Fibrosis Association of New Zealand last Friday and raised almost $35,000, which will go to families struggling to cope with the disease.
A group of friends will run this year's Christchurch Half Marathon on Sunday to raise money for the association under the team name Run Harry Run. To support Harry and donate, go to the website: givealittle.co.nz/org/RunHarryRun.