Gareth and Joanne’s story: Gracie’s journey with type 1 diabetes

Gracie was just shy of two when she was diagnosed. At that age, she loved imaginative play – dressing up as pirates, a firewoman and superheroes, of course. She enjoyed going to nursery, playing with friends and had a fascination with all things Halloween. She loved adventures in the woods and near our local canal – she also had a soft spot for music! 

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. 

Initially, we managed Gracie’s diabetes with finger pricks to check her blood glucose levels and insulin injections. One of the hardest things was that Gracie had no hypo awareness. Her blood sugar levels could drop dangerously low without showing signs – terrifying at home, even more so at nursery.

"The continuous glucose monitor (CGM) was a real game-changer. We were initially hesitant – it made her invisible condition very visible – but it transformed her care. Ironically, after deciding to pursue it, we had to fight for 13 months to get one."

It was a real shift in trusting the technology and not second-guessing everything all the time, and it also allowed Gracie’s care in school to be much more straightforward. We can follow her glucose levels from wherever we are, and there are built-in alarms, so we sleep a little better than before! It’s made those family days out or activities more manageable – we can intervene with a snack earlier, so Gracie doesn’t have the dreaded calm down time when a hypo hits. 

Hybrid closed loop

The insulin pump was the next step, giving flexibility around eating and snacking – those times when Gracie would decide to have a dessert after originally saying no. 

"Now with hybrid closed loop, we almost forget she has diabetes – something we’d never have dreamed of at the time of diagnosis. Ultimately, the added thinking, stress and decisions are dramatically reduced. She’s even had full school days without a single alarm, letting her focus on learning and thrive at football."

Gracie really shows off her personality through colourful pump belts to themed CGM stickers, including a Corgi patch to honour the Queen after her passing. 

As she was so young, we think Gracie struggled to understand her condition. She hated the finger pricks and insulin injections – it was a difficult transition from diagnosis to where she was more accepting. But she soon took it in her stride and actually injected herself with insulin within the first 12 months following her diagnosis.

"She’s never been afraid of telling people about her condition – in fact, she’s quite proud. We’ve always maintained that it won’t stop her from doing anything she wants to – we hope she maintains her optimism and doesn’t lose that drive to overcome any challenges that come her way."

As Gracie moved from CGM to pump, it helped massively with her self-management – she is much more confident in her own ability to look after herself. 

Advocating for others

Gracie has a huge passion for helping people and being a voice to those who need it, and that has certainly developed alongside her diabetes. She’s always keen to meet new people with her condition (and others), and she really wants to share her journey because she hates to see others struggle. We hope that she’s sensible and continues to use her voice for good.

As she gets older, we naturally have the same reservations as any parent – especially for those big life moments like moving out – that she stays sensible, protects her mental health and builds a long, happy life. Cure or no cure, that’s all we want. 

There’s no doubt that diabetes is hard and exhausting. We think that parents carry the overwhelm so that children can just be themselves, but it takes a toll, and it’s important to have strong support networks around you. We’re now at a stage where Gracie is looking after her diabetes more independently – which can, of course, bring stress and anxiety, but we have good communication between us as parents and with all who care for her. It takes a lot to trust others in caring for your child and you never get over that feeling of anxiety but seeing Gracie so happy makes every sleepless night worthwhile.

"Those early months were the hardest: no full nights of sleep, endless finger pricks, the constant weight of decisions. Over time, with support, it became easier for us."

For other parents in a similar position to us, seven years ago, we think the first stage is really making sure you and your family understand the condition and what it means for you. It can be super overwhelming and sometimes confusing to get advice from others who are much further ahead on that journey for you.

When you’re ready – there are some great online support groups out there – they can be great places to learn. Everyone’s journey is different, but sharing with people who understand makes a world of difference. 

As a parent of a child living with diabetes, you spend the vast majority of your time thinking about it. Before technology, we didn’t have a single full night’s sleep, and that could impact the whole household – especially if we had to treat a hypo through the night. Now we have a bit more thinking space.

Gareth said, “Gracie was lucky enough to go back to nursery, but her mum had to leave work to be on standby in case something went wrong. She has just this year returned to more substantial workloads, and that is down in part to that journey of managing Gracie’s diabetes through technology and the overall impact of the closed loop system.”

"Growing our family did feel scary, but eventually we were comfortable in the knowledge that we knew what signs and symptoms to look out for if any of our children also had type 1 diabetes. With Gracie’s siblings, we stay vigilant for any possible signs and symptoms of type 1 diabetes. That worry never fully switches off."

Impact of technology

Although our family are all incredibly supportive, there still, even now, remains a lot of fear around looking after Gracie overnight. In seven years, we can count on one hand the number of times she has slept somewhere without us. Part of that is on us not wanting to put that pressure on others, but the idea is certainly getting easier with a hybrid closed loop.

Since moving to a hybrid closed loop, we certainly travel a lot lighter for those shorter days out in terms of the supplies we need to support Gracie – no more need for needles, insulin and more. Longer trips and holidays can still be tricky as you need to prepare for all eventualities – airports are much more aware of diabetes, which is good. We have found that, as long as there is time, patience and an understanding that they aren’t as expert as you and are just trying to do their job, you should be fine.

Managing the everyday

"It's a condition that must be taken seriously, but that doesn’t mean it should take over your life."

With Gracie being diagnosed in November, Christmas was right around the corner, and we grappled with whether she should have an advent calendar, how to give the correct insulin doses for that, and more. It wasn’t until our nurse told us to just let her enjoy it and not to worry that we realised we can’t let it overcome us.

Those special occasions, such as Halloween and Easter – where chocolate and sweets take over – we feel Gracie should still be able to partake as before and are grateful to her diabetes team for support around this. This isn’t something that comes easily in the first few months. You need to be comfortable with diabetes and remember that your child can indeed enjoy these moments as they did before diagnosis.

Diabetes UK – especially the North team – have become more than just a charity – they’ve become friends to us over the years. Early on, their guides helped explain diabetes to our family and the nursery staff. Later, they supported us in fighting for a CGM, engaging with clinical teams and helping us reach a positive outcome. In our view, this support snowballed into the position we are in now nationally, with changes to CGM eligibility guidance. 

The North office is almost Gracie’s second home, and she has been so inspired by the incredible staff there, including those who live with diabetes themselves. We’ve been to many of the charity’s events now, and they’re always excellent opportunities to meet other families – Gracie has also made some lifelong friends.

"Our family has been so privileged to be so closely involved with the charity. They have supported us at our lowest points with Gracie’s diabetes care. Crucially, they’ve allowed Gracie to speak about her condition to those who call the shots within the healthcare systems – creating this platform for her and other people living with diabetes to speak about their own experiences has been a huge highlight for us."

Looking forward

When Gracie was diagnosed, we never imagined reaching a point where diabetes sometimes fades into the background. That’s been down to the speed of progress in diabetes treatment and care, particularly with technology. Following Gracie’s diagnosis, a nurse told us, “In Gracie’s lifetime, we will see massive changes in diabetes technology.” Seven years on, that’s already true.

Research may one day bring a cure or preventive treatments, but even now, understanding how people live and grow with diabetes is vital. This all comes from dedicated clinical and science teams continuing to push the boundaries of what we know.

When I [Gareth] was a student studying diabetes in the early 2010s, no one was talking about a cure or prevention, but now it’s a real possibility. 

"We’ll always fight for Gracie and others, supporting research – research that might one day stop other parents feeling like we did when Gracie was diagnosed or potentially losing their child to this condition."

Today, Gracie is thriving. She loves books, football, cooking, and has even started a YouTube channel to share her “best days”, singing and dancing to her favourite music. She is inquisitive, bright, and full of personality. Whether or not a cure comes in her lifetime, we know it’ll be okay because she’s already proving that diabetes doesn’t define her.

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Reach out for support

If you are affected by the topics highlighted within this story or other stories on our website, you can access support from our helpline team on 0345 122 2399, Mon- Fri, 9am- 6pm, or email helpline@diabetes.org.uk.

You can join our free Support Forum – to connect with others affected by diabetes (minimum age 13). For more information, see Forum FAQs.

For those aged 11-25 living with type 1 diabetes, check out our youth programme Together Type 1 for a supportive community of people who understand what it’s really like juggling the ups and downs of life with diabetes.