Latesha Poharama is determined to show the devastating effects heart disease has had on her and her whanau, with cardiac conditions a major killer amongst Māori.
At just 20 years old, Poharama struggled for every breath as her heart battled for every beat.
The once outgoing social butterfly was diagnosed with cardiovascular disease two years ago when she was just 18.
"I had shortness of breath, and I was wondering why I had blood in my spit," Poharama told The Hui.
Her heart disease was hereditary and the BAG-3 gene she had was passed down from her mother's side of the whanau. It's believed to have caused the deaths of many in their wider family, including her twin brother, James.
Her whanau thought he had a simple chest infection when he was admitted to Whangārei Hospital.
The BAG-3 gene the twins silently carried kicked off for both of them at the same time.
"It was freaky and traumatising. I wanted to do as much as I could for him but I didn't have enough powers," Poharama said.
For their grandmother, Rayna Tuhimata, it was a heartbreaking discovery.
"While I'm visiting James, Latesha's in the hospital over the other side of the wing and then finding all of this out. I was quite a shock for James because he was a very fit boy. He was a hard worker, he worked in forestry," Tuhimata said.
Tragically, James lost his fight for life just a few weeks after being diagnosed. He was just 18.
"No words can explain what I felt like. They're only babies to me and they shouldn't have had to go through this," Tuhimata said.
The 72-year-old was left to care for Poharama the best she could. The only respite she got was when Poharama's stepmother Stacey Walker-Haturini visited from Kaiwaka a few times a week.
She was incredibly close to her, forming a special bond when Poharama was just a young girl.
The BAG-3 gene that Poharama and her twin brother carried is rare and found in only 2 to 3 percent of cardiomyopathy cases. It's a disease that weakens the muscle that pumps the heart and can lead to heart failure.
"It's a relatively small number of people who have cardiomyopathy in general, but often these are very young people that are affected and often multiple family members," said cardiologist Wil Harrison.
Cardiovascular disease is the leading cause of premature death of Māori, twice that of Pākeha.
"One of the reasons that our people's cardiovascular health outcomes are not as good as non-Māori's is because we as a people overall are less likely to receive the best evidence-based treatment for those conditions. There's a complex reasons for that, but one of the key reasons is that currently, the health system does not treat Māori or Pasifika or other minority groups equitably compared to non-Māori," Harrison adds.
In Waikato, the District Health Board is hoping to catch cardiac cases early, launching the outreach programme Hāpaitia te Hauora Manawa, which specifically targets Māori communities to try and detect heart conditions early.
Backed by Māori health champion Lady Turiti Moxen, the initiative was launched earlier this month at Kirikiriroa Marae in Hamilton and delivers heart healthcare direct to whānau.
Cardiac nurse specialist Patumahoe Leaf-Wright said that early diagnosis and preventions are critical for Māori communities.
"I do all of this in a way that observes Tikanga that doesn't make them feel like any of it is their fault. And that it's mana-enhancing and that's the whole point," Leaf-Wright said.
But for Poharama, no preventative heart check could have helped. The inherited dilated cardiomyopathy she had occurs in late adolescence, with most who suffer from this disease not surviving within five years after diagnosis.
Poharama fought right to the end and was laid to rest at Tarakaka urupā in Kaitaia two weeks ago.
Made with support from Te Māngai Pāho and the Public Interest Journalism Fund.
