Kirsty's story: Coming to terms with our child's diagnosis

When I told Harrison about the walk, he said he would like to do it to help Eddie and all the children with diabetes, so we signed up and started a fundraising page.

Eddie and his dad are coming to Cardiff to cheer us on. We’re quite an active family and love the outdoors. We go out walking quite a lot, but Harrison hasn’t walked eight miles before so it’s going to be a challenge for him, I’m sure! I am hoping the walk will be lots of fun and we get to meet other families on the day. Harrison has asked that we take lots of chocolates and sweets in our backpack to keep us going.

Our son Eddie is 5 and was diagnosed with type 1 diabetes just before Christmas 2021. He was 3 and a half years old, and it came as a great shock to us as no one in our families has diabetes. 

I found it very difficult coming to terms with Eddie’s diagnosis and I didn’t realise the impact it would have on our family and our day to day lives.

"I really struggled with my mental health, and I had to go to my GP to ask for support. It was a difficult step, but I am so glad I did it. I knew I had to be there for my family and if I wasn’t well then it would make everything more difficult." 

Whilst the medical care was amazing, we didn’t find there was much support near us for families who have newly diagnosed young children. Being able to talk to families who had been through it already or anyone who could relate to the trauma involved, particularly in those early stages, would have been invaluable. We don’t want other families feeling like we did in those early days after diagnosis.

Nine months after Eddie was diagnosed, we went on a Diabetes UK weekender for families in Cambridge. It was just the right time for our family and something we could all do together. It was absolutely amazing. I cried and my husband cried. There were lots of volunteers in their 60s who had type 1 diabetes and they reassured us that Eddie was going to be OK and that they had had a very nice life. It helped us a lot.

I constantly worried about Eddie for the first year, whether his bloods were in range, worrying when they weren’t and even worrying when he started to run around like a typical three-year-old would. I’d think, ‘oh no, he is going to have another hypo’. I didn’t want to stop him joining in with his friends and having a nice time so I just tried to deal with it as best as I could. 

We still find that so many things can affect Eddie’s blood sugars: being active, being upset, being excited, being hot or cold, being poorly, being tired.

Holidays

One thing we find tricky is going on holiday with Eddie. If we go abroad, the heat affects his levels and the first time we went away after his diagnosis, his bloods went really low. He was also very active by the pool and so he suffered with some bad hypos which knocked him out. 

I found this so frustrating in the early days. It put a dampener on our holiday and both my husband, and I were constantly worrying about him. Now, we have learnt to follow the exercise guidelines much better, and we give him a carbohydrate snack before he exercises if he is too low. We then set a timer on my watch to top up his snacks every half hour according to the guidelines.

Coping better

Two and a half years in and I’m coping much better. I’ve been quite vocal with my friends, family, and the wider community about our difficulties as I don’t think people talk about their mental health enough.

I don’t believe anyone should feel ashamed to say that they aren’t feeling well, and I would encourage anyone in a similar position to talk to others and seek medical help if necessary.

We've met a lovely group called Gwent Children’s Diabetes. We meet a few times a year in Maesycwmmer and the group is run by an amazing group of volunteers who organise activities for the children and the parent and carers sit and chat over a cup of tea and biscuits.

We’re really lucky that at school Eddie has a dedicated teaching assistant who has been trained by the healthcare team, and who manages his bloods sugars in the day. She only contacts us if there are any problems.

We haven’t any other respite care as we can’t really leave Eddie with family and if Eddie wants to go on a play date we have to go with him. My mum helps out with babysitting and does as much as she can but at nearly 70, it feels a lot to ask. 

Since Eddie’s switched to a closed loop pump four months ago, things have got better, as the insulin automatically adjusts every few minutes according to his blood sugar levels. Before we could be up some nights every two hours giving insulin or treating low blood sugars. We are so glad that the NICE guidelines now stipulate closed loop systems for type 1, and we hope these can be rolled out as quickly as possible.

Although the technology is amazing it’s not a cure. The walk for me is raising money to find a cure. We’re getting closer all the time. Imagine a day where there is a cure; wouldn’t that be the best day.