I grew up always understanding what diabetes was, my dad was diagnosed at 13 years old so it was something I was used to seeing and hearing people talk about. We never had sugary things around at home and that was just something I accepted. Plus the options for sugar-free foods weren’t what they are now.

Dad took a ‘few shots a day’ of insulin and later on in our family journey, I would realise that this approach definitely needed some refining. But it was how he was taught as a young boy and he carried on managing his diabetes in the same way for years.

Dad’s mum was also known for her sweet tooth and was diagnosed with type 2 diabetes, plus his uncle went blind and died young. He was never diagnosed, but my suspicion is that diabetes was the cause.

Because the genetic link was known when I was young, I was tested for diabetes as a teen – as were my brothers – but nothing ever showed up. Then, at 30, while I was pregnant with my eldest son, I was diagnosed with gestational diabetes.

I was told that the GDM would likely disappear after I gave birth, but it didn’t seem to be the case. I lost a lot of weight after I had my son, I experienced months of blurred vision and despite taking high doses of metformin to manage what was initially suspected to be type 2 diabetes, there was no impact. I was diagnosed with late-onset type 1 diabetes.

While raising my son and daughter, I was always incredibly mindful of potential diabetes symptoms – I watched my teenage son all the time! But it wasn’t until lockdown, when my daughter was at home that I noticed it was her who was drinking so much water and peeing all the time. She was thin too, but I’d always put that down to her being busy with sport.

I actually did a finger prick test on her myself, and when her levels appeared very high – I contacted our local diabetes specialist team who admitted her to hospital for 4 days. And so Alyssa’s diabetes journey began. I am so thankful for lockdown, it allowed me to notice those symptoms and act quickly.

Alyssa says:

I was so scared of needles to start with, and confused about what the diagnosis meant for me, but because of my mum having it - I knew about diabetes, and she helps me.

Everyone I have come across so far since my diagnosis has been curious and helpful, so I’m not afraid to tell anyone. My friend Brooke has been a big part of my journey, she is always there for me and asks me what I need when she hears my sensor beeping.

I have made some great friends at Diabetes NZ Youth Camp, and as well as all the cool activities, we don’t ever let diabetes stop us having fun.

It really didn’t take long for Alyssa to adapt to life managing diabetes, Shelley says. She’s got all the tech – which has also been a game-changer for me, as for a while my levels were all over the place. In adopting the sensor and pump, and supporting Alyssa with her diabetes – as well as my own – I have become a bit of an expert, as well as a real advocate for the incredible technology available. So much so that my dad has really learned to listen to me and let me help him make adjustments to his own diabetes management.

Unfortunately, dad has had both of his legs amputated as a result of diabetes-related complications, but since I persuaded him to start using a CGM, he has seen a radical difference in how he feels and his energy levels.

I’ve ended up using my special knowledge and awareness with more family members too. A few weeks after my brother celebrated his 45th birthday, he called me to say he hadn’t been feeling well and that he thought he might have a urinary infection because of all the trips to the toilet. He also mentioned that he had recently tried on an old pair of jeans, and that they practically fell off him because he’d lost so much weight.

I instantly knew these things could indicate diabetes, and after supporting him to get tested – he was diagnosed too.

After her diagnosis, Alyssa’s class, her teacher, her friends and the wider school community were amazingly supportive. Everyone knew how to respond if she needed their help, the class worked together to learn more about diabetes, and there were even juice boxes scattered around so anyone could help her if needed! Her primary school (Pinehaven) hadn’t had a child with diabetes in their community for many years, if ever.

Alyssa is at intermediate now, and is one of four children at the school who live with diabetes. She has attended three of the Diabetes New Zealand Youth camps, and made a couple of really good friends who she stays in touch with. The camps are wonderful – Alyssa has learned so much, she compares notes and swaps stories with others and gets such confidence every time she goes.

Shelley’s top advice to parents:

It’s the most scary thing in the world when it’s your child facing diabetes. BUT,

Take up the offer of ALL the education and technology, it’s game-changing compared with life without it.
Don’t underestimate the ability of children and young people to adapt.

Diabetes is totally livable. You can live life absolutely fine with it. I really put it to the test when as a family, we did a massive trip to the USA. I organised mine and Alyssa’s medical kit, letters, understanding of the airport scanners etc, and we had the most incredible time.

Shelley and Alyssa's story