Gracie showed no symptoms until Halloween 2018. Dressed as cowgirl Jessie for her first trick-or-treat, she seemed only a little under the weather with a cough and cold, but in the end, we decided it was best for her to stay at home. That night, she wet the bed, which wasn’t out of the norm for her age. 

The next day, she was well enough to go to nursery, but after a few hours, we got a call – she was pale, tired and not herself. Once home, she began drinking more than usual, which we put down to soothing a sore throat. Later that evening, she went to bed but became very unwell and started vomiting. By morning, she was extremely lethargic, so we went straight to the GP. A locum doctor – our “guardian angel” – noticed her breathing was laboured on one side and sent us directly to the children’s ward, bypassing A&E. During that time, Gracie was very sick in the GP reception area, and on the car journey to the hospital, she became unresponsive.

At the hospital, we were met by a team of four paediatric doctors. A finger-prick test showed her blood glucose was 19mmol/L and her ketones were 5.4mmol/L. That’s when the doctor told us, “Your daughter has type 1 diabetes, but we’re going to get her better.” From there, everything was a blur – blood tests, tubes, syringe after syringe of saline. Every few minutes, an alarm would sound because a cannula had blocked, or Gracie had moved and pulled them out. By the next morning, however, she was like a different child – sitting up, eating toast, and feeding the fish in the play area (her reward for finishing her toast)! After we gave her the first insulin injection by ourselves, she was well enough to come home by Saturday evening [Nov 3rd].

It felt like a real punch to the stomach. We felt guilty for not recognising the signs and symptoms of diabetes and overwhelmed by questions we couldn’t process – it was hard to know where to begin. There was a relief that with Gareth’s profession, he did have some knowledge already on the medical aspects. Gareth recalls, “It was like we went into autopilot trying to sort all the practical things – ring work, ring family, make sure Gracie’s sister was okay. 

"It wasn’t until I went home to collect some things for Gracie that I broke down because I felt so sorry for Gracie having to go through this. Knowing the medicine doesn’t prepare you for living it, and although I understood what was happening, nothing prepares you for seeing your little girl unconscious or being injected.”

The days that followed

Our family was incredible. While also in shock, they were a great help – looking after Gracie’s sister, ferrying clothes and supplies back and forth and offering that emotional support. We do feel that due to Gareth’s experience in the medical world, Gracie was discharged quicker than perhaps others would have been. It did leave us feeling a bit abandoned initially. Although she was doing better, her blood glucose remained very high, and we were having to ring the diabetes nurses to ensure we had the correct insulin doses if she wanted to eat. Gracie’s diabetes team were amazing – they were always at the end of the phone if needed. They supported us so much over the first few days, weeks and months and continue to support us now.

"It was a lot to take on board, and we did feel unprepared – not that anything can fully prepare you. In essence, we had been given all the information we “needed”, but applying that was completely different, which I’m sure isn’t unusual for a parent in this position."

The one core memory we have is when Gracie’s nursery care worker visited us with a handmade card from her friends. She didn’t fully grasp it, but it broke our hearts a little bit as it dawned on us that things were going to be very different for her when she returned. 

My brother was diagnosed with type 1 diabetes a few years before me, so when I started to experience symptoms of extreme thirst, frequent urination, weight loss and lethargy, my parents knew exactly what it was. I went to the GP and they performed a finger-prick blood test, my blood glucose levels were sitting somewhere in the 20s. From there, we were sent straight to the hospital for further tests, after which, we were told it was likely a kidney infection and were sent home, but my parents weren’t convinced.

My lingering memory from that hospital visit was the toast and marmite they gave me with the bread only toasted on one side – who does that? At home, my mum saw me getting worse and knew I had the same thing as my brother, so she took me back pretty much straight away and within a matter of days, I received my diagnosis. 
 

I come from a large family and am the youngest of three children. We’re first-generation Caribbean – my mother was born and raised in Guyana, South America, and my father in Jamaica. He came to England in the 1960s and my mother in the 1980s. I’m a social worker by profession, a job which I feel deeply connected to because it allows me to work closely with people and communities. I am also involved in the Flagz Mas band, which is really special to me – it gives me the chance to celebrate my heritage, create unforgettable experiences, and be part of a community that feels like family. Being able to contribute to something that brings so much joy and unity is deeply meaningful to me. 

Unfortunately, diabetes has cast a long shadow over our family, especially as more members began to show signs over time. My dad has lived with type 2 diabetes since the 1980s and is insulin dependent. My two older brothers have also been diagnosed, and on a wider scale, my grandparents and an uncle lived with it too. 

"My eldest brother was diagnosed when he was 34 – he started showing common symptoms: constant thirst, frequent urination, extreme fatigue and losing weight without trying to."

 At first, he didn’t link those symptoms to diabetes. Things worsened during a family holiday in the US, where he sought medical advice and they told him he was showing signs of diabetes. Following his return to the UK, he saw a GP and got the diagnosis. 

My middle brother followed a similar path in 2024, with a diagnosis in his early 30s as well. Both of my brothers were diagnosed at around the same age as my father. 

We didn’t have type 1 diabetes in the family, and originally, I didn’t really know much about it – just that it meant you needed insulin.

Then, my son Joe was diagnosed in 2017, when he was 13. He was very unwell with diabetic ketoacidosis (DKA) and ended up in the high dependency unit. That was our crash-course introduction to type 1 diabetes.

After that, we were invited to take part in a regional research study, which was looking at family members of people living with type 1 diabetes. My husband, our daughter Jaz and I all took part.

"We were happy to do anything that would help researchers understand the condition more."

We had a blood test that looked for signals called type 1 diabetes autoantibodies. These are early indicators that type 1 has started to develop. That’s how we found out that Jaz had these autoantibodies. She’d just turned 16.

At the time, we didn’t really understand what having these autoantibodies meant for her future risk of type 1. But I now know Jaz is in stage 1 of early type 1 diabetes. This means she has multiple autoantibodies and doesn’t have high blood sugar levels yet. But it’s very likely she’ll go on to ‘fully’ develop type 1 diabetes at some point and need insulin.

I was initially diagnosed with type 2 diabetes after displaying the common symptoms of type 1 diabetes, such as losing weight and having extreme thirst. However, it was later confirmed that I had type 1 diabetes after the tablets weren’t helping and so I was then put on insulin.