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Shared experience

Alfie’s nanny shares why she’s positive about the future for people with type 1

Alfie’s story

Alfie’s type 1 diabetes diagnosis

My name is Nanny Bumblebee. Well, that’s what my Grandson Alfie calls me. I have a tattoo ​of a bee on my wrist and the name sort of stuck.

Last October Alfie was on holiday in Cornwall. He was playing on the beach, in the sea, ​and in the garden, when he ​suddenly became ill with a suspected tummy bug. Alfie was sick, lethargic and hardly moving. An ambulance was called​ and he was rushed into hospital. Alfie had gone into diabetic ketoacidosis. It’s a very serious condition where there are dangerously high levels of acid in the blood. Alfie was very quickly diagnosed with type 1 diabetes.

JDRF KIDSAC made a huge difference

Within a few days of treatment Alfie began to recover. While still in hospital he was given a JDRF KIDSAC. The KIDSAC is a bag with information about type 1 diabetes, a children’s book to help explain type 1 diabetes to him, and a teddy bear called Rufus showing the places he would need his regular insulin injections. These simple things made such a difference to his understanding of type 1 and its treatment. It helped so much with talking to such a young child about the way in which his life would change.

“I think Rufus is cool because he shows you where you have your injections!”

Over the next few weeks Alfie’s strength gradually came back and he started to gain weight again. I spent as much time as I could being with Alfie and his parents. I watched as his mum tested his blood and gave him his injections. We were all in a kind of shock, coming to terms with what had happened. Our emotions were very raw. Every now and then the enormity of it all would hit like a wave. Life had changed for Alfie dramatically. ​Alfie would need his blood monitored and have to have insulin injections for the rest of his life​.

Managing Alfie’s type 1 diabetes

The hardest thing is when Alfie gets fed up with the injections and just doesn’t want one. It’s emotionally draining trying to coax a four-year-old into having one. Some of his reasons are pretty amazing and inventive:

“I AM A SKELETON AND INJECTIONS WILL BREAK MY BONES!”

“I AM A ROBOT, I NEED BATTERIES AND ELECTRICITY, NOT INSULIN!” (in a robot voice, of course)

We talk to Alfie about why he needs his injections – luckily he is really interested in the body and how it works.

To begin with I felt a bit helpless and daunted by it all. But I realised it was enough just to be there. As a family we are continually learning what his needs are and how to keep his glucose levels stable. Alfie is trying out a glucose monitor patch and phone application, which has taken away some of the stress from finger pricking. We are waiting for the funding for a pump to come through – hopefully this will make things a little easier still.

Life-changing type 1 technology gives hope

I joined the JDRF technology seminar in December 2021 to see what was available for Alfie as he grew older. I was amazed at the different technology available. I felt so much more positive for the future. JDRF have worked so hard to make some of this tech available through the NHS for all people with type 1. It is amazing to think that in the future Alfie may have access to an external pancreas or even a cure.

​Alfie copes amazingly with type 1

Since Alfie’s diagnosis last October, a lot of things have changed for us as a family. It has taken quite a bit of getting used to!

Type 1 has now become a part of our lives, instead of our whole lives as it was in the beginning​. ​Most of the time we feel like we have it under control ​- even when we are completely winging it.

We now have the confidence to live our lives and have normal family days out and experiences​.

Alfie has coped amazingly. Although we have had our ups and downs​, ​on the whole he has accepted what needs to be done and why.

The KIDSAC made a huge difference to Alfie and his understanding of his condition. We now know the book off by heart and Rufus is a very much cuddled friend!

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