Harley Miller is one of life’s unlucky warriors. He battles through five different ailments each day with one overarching objective in mind – to make happy memories, which is exactly the kind of thing Satan’s Little Helper likes to help out with.
When 16-year-old Harley is asleep, he dies once an hour.
“He stops breathing for 30 seconds,” says his mum Helen. “His heart stops beating and the only thing that saves him is his brain, which tells his body to kick back into action. I’m used to it now, but when it first happened it was really scary.”
The cause of this terrifying condition is sleep apnoea, which is when the muscles in a person’s airways relax and forms a blockage.
Harley was diagnosed six years ago and underwent surgery to try and correct the problem.
“Surgeons broke his nose and jawline, took away part of his cheek, removed his tonsils and shaved off some of his tongue, but it didn’t work,” explains Helen.
Further corrective measures could be taken, and they’re all just as unpleasant. Harley may have to go under the knife again and is scheduled to see his doctor later in 2022.
“His oxygen levels need to improve,” says Helen. “Currently they’re at 60-70% and they should be at 90-100%. One option is to have a tracheostomy (a hole surgeons make through the front of the neck into the windpipe), or to have his previous surgery repeated to see if it’ll work this time.”
As if that wasn’t enough, Harley suffers from mobility limiting spina bifida, gout and arthritis.
“His ankles, knees, hips and back are all really bad. He doesn’t have the mobility of most kids his age and because of his gout he can’t eat seafood, which he loves!”
He also has deteriorating eyesight that will limit his ability to do things like drive at night by the time he’s an adult.
Helen approached Satan’s Little Helper with the aim of giving Harley some good memories, so we hooked him up with a session of indoor skydiving and sent him on the TSS Earnslaw cruise in Queenstown.
“Harley has always wanted to try indoor skydiving and he loved it. He was really comfortable with the instructor and he flew by himself a few times. He really got the adrenaline buzz from it and when he came out, he was smiling from ear to ear.”
The cruise brought Harley back down to earth and helped him settle after the buzz of being in the air – contrasting experiences that he can add to his scrapbook as he bravely battles against the adversity that his body continues to throw at him.