Although I was keen to be part of the pilot scheme, my GP wanted me to think about it and discuss it with my family. She explained in a lot of detail what it would entail and mentioned the soups and shakes. A week and a half later I went to see her at the surgery still adamant that I wanted to take part. I discovered that at 65, I was at the age limit to be accepted for a place.
 
The next step was to have an interview with the doctor running the programme at the hospital, as well as a dietitian. I was also required to meet with a psychologist, which was important. We had a relaxed chat, just to see if I had the right character and commitment to see the course through. It was expensive for the NHS to support me on the programme, so they needed to know that I was serious.

My diagnosis was a real wake-up call for me and one I’ve really benefited from.

I’ve kept the weight off and I’m a lot more careful about what I eat. I’ve really immersed myself in knowing the make-up of my foods, cooking from scratch, and knowing what I’m eating when I’m out and about.

And now, even though I’ve eased off or I have the occasional treat, I’m still very much aware of my nutrition and wellbeing. You can still enjoy food, it’s all about moderation. It wasn’t easy but I don’t want to be taking diabetes medication for the rest of my life.

However, it’s important to say that my regime and approach might not work for everyone – but it’s what’s worked for me. 

Connor has learnt to manage his diabetes really well and has great support surrounding him. In some cases, his friends are more understanding than some adults. They all learnt about Connor’s condition from Connor himself. They look after him, they know when to grab an adult for help, and they don’t even bat an eyelid when Connor has to stop and finger prick or eat a snack in class if needed.  

"My advice for any parents of children living with diabetes is that it does get easier, it becomes your normal – education and awareness play a big part in that and are key. Celebrate the good days when they come around, and don't be afraid to try new things!"

In our case we were very lucky to have the knowledge and support around us to prepare well for our son’s diagnosis at the time. Family experience and my own mother who is a retired Diabetes Specialist Nurse was a fantastic help. She helps a lot with Enda’s care and is a massive support, especially when I am at work. I know if our results indicate Aodhan or Cillian’s are at risk of type 1 diabetes, we have a great support network to help us.

As part of the ELSA study, parents or carers will receive information and resources should they receive a positive result – this will be a brilliant support to help them prepare for everything a type 1 diabetes diagnosis can involve.

We can strive to make things better

My advice to any parents or carers out there is to absolutely take part in the ELSA study and know that, should they have a positive result, it will not hold their child(ren) back. 

I have always lived a healthy life with my diabetes and always encouraged to never let it stop me. I have maintained strong attendance at school and work and have always participated in team sports and tried to maintain that normal lifestyle.

Keep your young ones involved in anything they want to do and don’t be afraid. Enda is playing Gaelic, soccer, and takes part in swimming. He also has an assistant in school who supports his care at sporting events and trips. Enda never lets diabetes hold him back and I encourage him to say yes to absolutely everything. Diabetes just has to fit into our life!

"My goal as a mum of a child with type 1 diabetes is to educate Enda as much as possible so that he will be able to independently manage his diabetes. As I said, education is empowerment. Enda is already learning so much from identifying his own hypo/hyper signs, treating these, and knowing how to do his own finger pricks, pump changes and carb counting. Children really do surprise you with how much they can take on board and also how responsible they can be."

I do have concerns around the lack of funds in Northern Ireland to support adult type 1 diabetes patients to access advanced CGM devices and how this may impact Enda in the future. I hope to see a time in the near future where this type of technology is available to all.

I think one of the most important takeaways is to understand that with diabetes, not every day or week will be the same. We can’t make things perfect all the time and we do face some challenges now and in the future, but involvement in studies like ELSA shows me that we really can strive to make things better.

Find out how your child can take part in the ELSA study

Now 26, SALLY not only manages diabetes but a full-time job as an animator, and a career as a Drag artist, performing regularly across the UK and closer to home in the North East.

They added: “I’m in a much better place now, but it can still be difficult. Managing blood sugar levels, hypos and hypers on a demanding schedule isn’t always easy but I have a good support network around me.

“Some weeks can be hectic; I can be working 9-5 and performing several nights a week until 2 or 3 in the morning.  Friends and colleagues know I have type 1 and what to look out for if I need to treat a hypo or hyper. I’m grateful for that support system.”

They added: “I wish I’d had access to some more specialized support growing up, but I’ve come a long way on my diabetes journey. I’ve learned to accept who I am and my diabetes.” 

Diabetes UK’s youth programme offers peer support, information and guidance for young people aged 11-25, living with type 1 diabetes.