Freya and Claire's story

Freya was diagnosed with type 1 diabetes at age five. She hadn’t been sick recently, and I can’t pinpoint why or how she developed type 1. We knew nothing about diabetes. It isn’t in our family, so the diagnosis came completely out of the blue.

She had just started school about two weeks earlier. Because we didn’t know the signs of type 1 diabetes, we missed them. Initially Freya was very tired, we assumed she was just worn out from the big change of starting school. She then started vomiting we thought it was just a tummy bug.

Diagnosis was also during COVID, so we never actually saw a doctor in person, only spoke on the phone. Freya was prescribed anti-nausea medication. But she wasn’t getting better. Eventually I demanded we needed to see a doctor in person as she had lost a lot of weight. It was only then that we were told to take her to hospital. Which I thought was a total overreaction but took her anyway. Freya was in DKA. She spent a week in hospital.

Freya actually handled injections incredibly well. She took the whole thing in her stride. We had a really positive hospital experience. The nurses were lovely and really knowledgeable. The diabetes team at Hutt hospital do a great job. Our diabetes nurse Lesley is amazing she made the whole process to easy and gave us confidence.

We also had a really positive back to school experience. Freya is the only t1 at her school. Freya has an amazing teacher aid Tina who has stayed with her for the last 4 years and supported her through lots of changes with her diabetes management over that time.

It wasn’t until we started using a pump that Freya developed an intense fear of needles, and every site change became a Chernobyl-sized meltdown. Having the tslim was great for diabetes management & Freya had been really excited to start on a pump. But this was probably the hardest part of our diabetes journey. Freya really hated the pump, it was smashed multiple times and it made her feel different to her friends.

Eventually we decided to self-fund the Medtrum Nano and also tried the Omnipod dash. Both pumps were a game changer because Freya couldn’t see the needle going in and she could hide the pump under her clothes. Even then, every site change still involved what felt like hostage negotiations. This was before CGM funding, so paying for the nano and Dexcom was costing hundreds of dollars a month. We were very grateful to have Dexcom funding and about a year later we also got funding approved for the nano.

Moving to the Medtrum Nano also allowed me to build Freya a fully closed loop. It means we don’t carb count or bolus. Freya just eats and the pump adjusts insulin automatically in the background. Our goal with Freya has always been to let her be as normal a kid as possible. She eats whatever she wants whenever. She has great time in range. Having a fully closed loop means she doesn’t have to think about diabetes, just when it’s time for site or Dexcom changes. It also gives us a hands-off approach. Sometimes I don’t think about diabetes for a few days then suddenly remember I need to change her site.

Along the way we’ve also made some incredible friends in the diabetes community. Very grateful to have such supportive people and diabetes role models in Freya’s life. And after diabetes camp, something shifted for Freya. We’re still not entirely sure what they did there to change her mindset around site changes, but it worked. Now she wants to be involved in the whole process and these days she’s even pushing the needle in herself. We’re supporting Freya to be more independent and love herself.

I actually really enjoyed the carb counting and maths aspect of managing type 1 diabetes & building Freya’s fully closed loop. I’m a perfectionist, so even while we were still in hospital, I was already trying to perfect a strategy for how we would manage it. But what Freya has taught me is that no matter how hard you try, diabetes will never be perfect. Through her, I’ve learned more about myself than I ever expected. She has pushed me to grow and develop as a parent, teaching me patience, empathy and resilience. She’s also taught me that sometimes the goal isn’t perfection, it’s learning to accept the imperfect and keep going anyway.