Jill Arliss
April 16, 2021
August 10, 2021


Rangi's story

My journey with hPOD started in 2019. I was approached after my daughter Kaia was born. When I was asked to participate in the research, I knew straight away that it was my responsibility, not only for my daughter and my son but also for our future generations, to participate in something like this. I am the third generation in my whānau with diabetes, and I wanted to break that cycle and be a part of anything I could to minimise the risk of my kids developing diabetes as they grow up. So when I was approached to do it, I knew it was something I wanted to do, but I knew I had to consult with my whānau, my partner, and make sure it was something we all committed to together.

My sister had also taken part in the hPOD trial, and she was all for it as well and said this is something we need to do as a whānau, so she encouraged me to get on board with hPOD.

What do you think are the benefits of having taken part? The realisation that being part of hPOD has contributed to my future aspirations for my children and my whānau, hapu, and iwi. Contributing to this type of research which I don't feel has had much Māori representation, I feel like I have restored some mana for my own whānau being a part of something this important.

How is Kaia doing? She is doing amazing. She is now two years old, thinking that she is five. She is bright, bilingual. She is loving play which is really important for her development. Healthwise, she has never had any serious hospital admissions or anything like that, I feel hopeful for her future.

Has being in hPOD changed your thoughts on clinical trials?  Being part of a clinical trial, I used to think wasn't for someone like me. Now I very much think that anyone could be a part of this type of research.

How can we encourage more Māori to get involved with research? For my whānau, this becoming a normal conversation has been really helpful. I think it is about normalising research. Having conversations about health can at first feel shameful or be a courageous conversation to have, so it can be a bit difficult when you first start talking but as soon as that happens, it's a bit like ripping a band-aid off, and the healing starts.

How have you found clinical trial follow-up visits? I have found them really fun, and my daughter just wanted to play with everything at once. I found home visits perfect because I can imagine taking a child, especially a pēpē, out of their safe space at home, putting them in a different environment, and then expecting them to explore things, that might not work. So, the fact we were able to do follow up visits in the safety of her own home, she was really comfortable, and we were getting the best engagement out of her. I found the visiting really positive.

What would you say to a friend or whānau member if they were asked to participate?  If I were approached by a friend or whānau member asking for advice, my first question would be, why not? I would then talk about my experience and benefits for our future children and our experiences as Māori women and paving the way for the future.

Any other reflections on your participation? Having learned that the results of hPOD show how positive the trial has been in terms of finding a way to help minimise the risk of brain damage for our pēpē is really humbling to hear. Having thought of the purpose and why I wanted to take part, that is just beyond what I would have thought could have happened, especially on a global scale. That makes me really hopeful for our tamariki and our mokopuna in the future. I can't wait to see what else develops from this research.

It gives me goosebumps thinking about our mokopuna in the future, having the results of this play out. Maybe mokopuna in the future will be like, 'my nanny Rangi was a part of that!', so it's really humbling to hear, and I'm actually quite excited for what's to come.

What are your hopes for Kaia's future? Reflecting on the trial results, there's very much the idea around the risk of minimising damage to the physical brain, but also the spirit of the brain is important. My aspirations for Kaia are that she is physically safe and grows up to meet her goals. So, in a scientific world, I hope she has access to all she needs and minimised risk in that sense, but I also hope that the spirit of her brain, and the spirit of who she is, is also intact.