If five-year-old Chase was one in a million, he'd have five other Kiwis that would know what he's going through.
He doesn't. He's New Zealand's one and only sufferer of Barth syndrome.
!["[Chase] could be taken out by a cardiac arrest or heart failure, at any time and our lives could change any day."](https://www.newshub.co.nz/home/new-zealand/2020/09/hamilton-boy-could-die-after-heart-transplant-funding-declined-by-ministry-of-health/_jcr_content/par/video/image.dynimg.1080.q40.jpg/v1599289434804/give-alittle-chase-porter-1120.jpg)
On Saturday, a stranger touched by the boy's need for a life-saving heart transplant ran an ultra-marathon around Hagley Park to help raise funds.
At 5am this morning, in a 1C frost, Canterbury University student Richard Turpie set off on his mission.
An ultra-marathon, 100km around Hagley Park, more than 12 hours on his feet.
"Feeling good, feeling good," Turpie said.
The reason why? Five-year-old Chase.
Turpie heard about his story in the news and was compelled to help, meeting for the first time on Saturday when Turpie was 83km into his run.
"Brilliant to see you, oh my god, it's been a bit of a day," Turpie said. "It's not hard to find motivation when you're doing it for a cause like this."
"It's just so kind, just the kindness of strangers has been amazing, there were a couple of years there where we were in and out of hospital and we just felt like we were doing it all alone," Chase's mum Kelsi Porter said.
Chase is the only person in the country with Barth syndrome and is living with heart failure and now requires a transplant.
"It's like being hit with a comet, it's very confusing when you first find out and you don't know where to go and where to turn or who to talk to," Porter said.
The family flew down from Hamilton today to see Turpie do his run, days like these are the good ones.
"A couple of times Chase has been in really big trouble and has been resuscitated, it's been pretty hectic," Porter said.
Nearly 200 people joined Turpie on parts of his run today raising money for the family's Givealittle page.
Chase's heart function has got worse recently and is now down to 24 percent of what it should be.
And while he can't walk far now without getting puffed, even ultra-marathon runner Turpie can't keep up with him on his bike.
