After the initial shock of the Kaitangata youngster’s diagnosis with life-limiting genetic condition cystic fibrosis — when he was just 3 weeks old — parents Tania and Gavin quickly adopted a positive approach.
Learning everything they could about the condition, which affects about 500 New Zealanders, including 15 newborns, each year, Mrs Sutton discovered quality of life could be improved by using a vibrating jacket not usually funded in New Zealand.
Called the Hill-Rom Vest, the $16,000 device inflates and vibrates the user’s chest to help mobilise the thicker mucus the condition causes, aiding breathing.
She said community fundraising support for the jacket, which Harry only became big enough to use about two months ago, had been "incredible".
"One Milton businessman donated $8000, and together everybody’s help just means Harry now has this vest for life, and can control his own treatment as he gets older.
"He thinks it’s pretty cool ... most of the time. Sometimes he’s not too keen, like all 2-year-olds."
Surplus funds would be used to buy larger vests and innovative treatments as Harry grew up.
The device supplemented the family’s own, twice-daily, "percussion" treatments, and gave the youngster — and his parents — increased freedom.
In other ways, Harry’s life would always remain restricted.
"Life under Covid was pretty much our everyday since Harry was born, with sanitiser and social distancing, and extra care around bugs."
The youngster had had six hospital admissions in the past year, she said.
"You want to fiercely protect them from anything they might pick up, but not miss out on quality of life.
"It’s a real pull between your head and your heart."
