Keri and Ryan Topperwien on the beach with their son, Chace. Photo / File
Keri and Ryan Topperwien on the beach with their son, Chace. Photo / File
OPINION
There are a few moments from my decade or so as a reporter that will stay with me forever.
One is the funeral of Chace Topperwien.
Chace died from acute myeloid leukemia in 2012, a few months after his third birthday.
His Whakatāne parents, Ryan and Keri, had sharedhis story publicly as part of their drive to find a bone marrow match, and to grow the small pool of Māori donors on the registry.
In his few years fighting for his life on Earth, this sweet, cheeky kid and his loving family had an outsized impact on our small town, and his funeral reflected that.
The small coffin in the big, jam-packed theatre. The emotionally-charged moment - joyful and tragic all at once - after the service when the community let hundreds of yellow balloons go into the air, in his memory.
I wasn't a friend or a relative, just an outside observer, but I'll never forget how that moment made me feel and what it said about the gift of Chace's life.
Ryan and Keri now run the Dream Chaser Foundation, supporting other Kiwi children and families facing childhood cancer.
Yellow balloons were released at the funeral for Whakatāne toddler Chace Topperwien. Photo / File
All over New Zealand, there are families who are supporting children battling terrible sickness. Far, far too many of them.
In Tauranga, there is little Archie. At 3, he has Aicardi-Goutieres syndrome, a rare genetic condition leaving him physically and intellectually disabled.
The little lad with the sweet curls can't move by himself and is fed through a nasal tube. A machine breathes for him.
His family are grateful to have seen him through his third birthday. Doctors had suggested he may only live to 3 or 4.
His devoted mum, Grace - at just 23, the veteran of a long and difficult journey to get a diagnosis - tries not to think about his life expectancy too much.
"It took me a long time to accept the picture of our future that I had envisioned wouldn't happen but I grew to accept this journey that me and Archie are on and now I wouldn't change it for the world," she told the Bay of Plenty Times Weekend.
She has been in and out of hospitals regularly her whole life and since she was four months old she has had chest physio four times a day. She is tired a lot, and understandably so.
Only about half of people with her condition make it to the age of 31, a statistic she is old enough to understand and come to terms with alongside her family.
As reported in today's Rotorua Daily Post Weekend, there is a drug that could make dramatically improve her life but it costs the price of a small house every year. It's shocking.
I've seen family, friends, neighbours and people in my community go through situations such as these, but no amount of sympathy can put me in the shoes of these children or their parents.
Not only is every member of these families living with the day-to-day demands of a serious illness and the melee of doctors, diagnosis, and treatments that come with it, they must also confront gut-wrenching, heartbreaking realities about the course their lives will take.
Their mettle is laudable, of course, but I am certain any one of them would sacrifice any given thing to not need it; to have their child be healthy, to have the luxury of taking some days for granted, to not live with the pressure to make every moment count.
Those of us with the privilege of looking at these struggles from the outside can only hope we will never need to find the kind of inner strength.
