“Knowing Seth will need insulin in the future has given us the chance to get our heads around it.”

In 2020, my eldest son, Zach, who’s now 14, became poorly very quickly. He wasn’t feeling right one Friday, and by Tuesday he’d lost so much weight that his school trousers were falling off him. We took him to A&E where he was diagnosed with type 1 diabetes.

When Zach left the hospital after his diagnosis, we had a brilliant kit from JDRF with lots of information in. It helped give us the knowledge and tools we needed to work out how to live this new life. But his diagnosis hit the whole family hard and I was concerned about what the future held for my other children.

Screening children for type 1

Two years after Zach’s diagnosis, I heard about the ELSA study through social media. The study screens children aged 3-13 years for early signs of type 1. Seeing Zach so ill had been incredibly difficult, and we didn’t want to get to that point with any of our other children. We knew that if we got them screened, it would help us to pre-empt anything, and they could be monitored to avoid serious complications.

Our eldest daughter Grace, aged 16, wasn’t eligible for the ELSA study at the time. But two of Zach’s siblings, Seth and his younger sister Orla, were in the study’s age bracket, so we enrolled them. We soon received the test kit, which was a simple finger prick test that we did at home.

Early signs of type 1 diabetes

Within a week, I received a phone call from one of the doctors involved with the trial, Dr Lauren Quinn. She said that Orla’s results were negative, but that Seth had tested positive for type 1 diabetes autoantibodies, which are biological signs that he is developing type 1. Seth was then booked into our closest ELSA centre at Birmingham Children’s Hospital for a venous blood test.

The blood test found that Seth had two different autoantibodies, confirming he was in the early stages of type 1. He then had an oral glucose test and his blood was taken every 30 minutes to determine his glucose levels and which stage of type 1 development he was in.

Stage one type 1 diabetes

Once the results came through, Seth was diagnosed with stage one type 1 diabetes. This means that there are two autoantibodies present and that he has fluctuating blood sugar levels, but they come back down on their own. So, he doesn’t need to start insulin treatment yet. I was shocked, but relieved at the same time that we knew. It means Seth can be monitored and looked after.

Seth said: “At the beginning, I was a bit nervous about the test for the study, but I soon realised it was fine. When I was diagnosed with stage 1, I felt a bit scared because I didn’t know what was going to happen. But I just live my life as normal. I spend a lot of time in the garden on the trampoline and I love gaming. For me, it’s better to know beforehand about my diagnosis than for it to be a shock when it happens. I don’t have any regrets about taking part in the study.”

Understanding the stages of type 1

We had an education session with Dr Lauren Quinn to help us understand more about the stages of type 1 and what to expect.

Infographic of the stages of type 1 diabetes.

There’s no definite timeframe, but the ELSA study team anticipate it could be around 15 years until Seth reaches stage 3 and needs insulin, unless there’s some kind of trigger. A diagnosis could be triggered by something like a virus that attacks the pancreas.

Monitoring type 1 diabetes progression

Seth has a FreeStyle Libre 2 continuous glucose monitor (CGM) to monitor his blood glucose. It alerts us via our phones if his blood glucose levels get too high or too low, and we follow up with a finger prick. The data also connects to the local diabetes team who monitor him. Seth’s HbA1c level, a measure of his average blood glucose, is checked every three to six months to see how his type 1 is progressing.

Seth is also part of the INNODIA study and through that has yearly oral glucose tests and a random glucose test every six months. This all gives us peace of mind that he’s being looked after.

Coming to terms with the diagnosis

Having this information has given Seth time to get his head around it. We’ve already discussed whether he’d like an insulin pump when his type 1 progresses or if he’d be happier with insulin injections.

When Zach was diagnosed, it was like a grieving process and learning a whole new life. We’ve already done the grieving process with Seth. When his condition does progress, we know what we’re doing and we’re going to roll with it. It’s not just a sledgehammer, all in one go.

I think a lot of families can take comfort from that. I’d encourage parents to read up about the study. You can stop at any point and there is so much support from the ELSA team. I also set up a Facebook group called ‘The ELSA study for parents’ to help other families like mine. We have around 140 people in the group who all support each other.