Matt's story: Getting back to a healthier lifestyle after our daughter’s diagnosis

Our daughter’s diagnosis has been life-changing for us and we’re trying to do anything we can to raise awareness and money to support research in the hope that one day there may be a cure. At Christmas, we bought Diabetes UK cards from the shop. And we've also bought wristbands.

I’ve done a lot of reading on the Diabetes UK website about different areas. If I have any kind of questions, there’s a pretty good level of answers through the information. 

It’s probably a bit of an excuse but since Sophie was diagnosed seven months ago, I haven’t been to the gym. It’s been so challenging in the evenings and we’re not always getting enough sleep in the night.

Time has flown by and it’s impacted us in many different ways. And we need to work out how we turn things into a normal routine and a healthier lifestyle. 

So I’ve signed up for the Birmingham Wellness Walk in July, and I’ve also signed up for the 100 push-ups a day event in June. I’m not sure I can do more than 10 at the moment! But I’ve got a month to practise.

We want to raise money, but I also need to get out and do a bit more exercise and get in shape. You’ll see six of us doing the walk – my wife Paloma, my mum, dad, brother and sister-in-law.  We’re going to try and bring Sophie along. She’ll be in the pushchair but she’ll probably want to do a bit of the walk, we’ll see how it goes! 

Sophie was diagnosed with type 1 diabetes at the end of October 2022. She was nearly two.

Looking back, we now realise she had all the symptoms of type 1 diabetes. She was filling two or three nappies and drinking all the time. We actually spoke to the doctor who said:  "Babies do drink a lot of water, there’s no need to be worried."

Paloma, my wife had said a couple of times could it be diabetes? – as her mum has type 2 diabetes. But I just thought there’s no way she’ll have that. I didn’t know how you got it.

Sophie was quite violently sick one afternoon, and we took her into hospital because we thought something’s not right. They checked her blood sugar levels and rushed her straight in as she was in diabetic ketoacidosis (DKA).

It was a complete shock because we knew nothing about type 1 diabetes. I would have said it was too much sugar, but now I know what it really means. I keep everyone at work, family and friends who care about Sophie and about us, informed on what I’ve learned about diabetes. It helps me to say it out loud and replay it back.

Sophie has coped much better than us. Within a week of diagnosis while in hospital, she was helped do the blood check, and giving us her finger for it. And helping get the machine out.

Sophie understands that if the phone linked to her Continuous Glucose Monitor (CGM) bleeps that it’s something to do with her levels. She’ll sometimes say ‘milk, daddy’ – because she knows if her blood sugar level is a bit low she gets milk. 

It can be a real ordeal trying to fit the new sensor every 10 days. Sophie would get really upset and be shaking. We have to peel the old one off and clean it and click the monitor in. She hates it. But the last two times, it’s gone a lot better. We’ve used sprays to peel the old one off and it’s gone more smoothly. 

We started using the CGM shortly after Sophie came out of hospital. She has a phone that links to the sensor and our phones are linked too. I don’t know what we’d do without the notifications (alarms).

When Sophie's at nursery and I’m at work I can see her levels on my phone and I’ll get the alarms too. I can see in real time what’s happened over the course of the last 24 hours or follow what her levels are. And see when she’s been given insulin. We use the My Life app which tracks everything.

Nursery care

Paloma works at the nursery that Sophie goes to, so she doesn’t really get a break. But she isn’t always in the same room. The staff there have been great. There are two key workers and we took hospital staff in and they’ve been properly trained in diabetes care and she has a care plan. My mum has a day a week with Sophie so she also knows what to do. 

The alarms go off repeatedly in the day and it’s a miracle if goes off only once during the night. It’s really hard to try and keep Sophie’s blood sugar levels within range.  

Last week, her time in range was 59% which we think is far away from where we want to be, but 20% better than we have been. But other parents say that 60% is amazing. The Dexcom (CGM) gives you a summary each week of what the patterns are and tips on what you can do, for example: “Think about giving more insulin here.”

The biggest challenge for us as a family is thinking about the impact of anything Sophie eats or drinks on her blood sugar levels. "It’s so important to teach a two-year-old that her friends can’t just give her a banana."

Talking to other parents really helps. We were in hospital for just over a week when Sophie was diagnosed. And the diabetes nurses there – Helen and Mandy – were absolutely fantastic. And they’ve continued to be super supportive. They’ve introduced us to other parents and local groups – and we’re planning to meet up for a picnic with some of them in the summer.

We’re having a discussion at the moment about whether to get Sophie an insulin pump to help stabilise her levels. Some parents say absolutely not, and others say it’s absolutely the best thing! We’re somewhere in the middle at the moment.