JDRF, the type 1 diabetes charityStories“Showing my son he’s not alone”- My family’s visit to a JDRF T1 Youth Ambassador Day.

“Showing my son he’s not alone”- My family’s visit to a JDRF T1 Youth Ambassador Day.

Author: Caroline Binfield's story | Posted: 08 December 2014

By Caroline Binfield

I’m an Irish run-ragged mummy to three manic children. One of which, Jasper, is five. He was diagnosed with type 1 diabetes in September 2013. blog_Caroline Binfield5

It’s taken me a year to attend a JDRF T1 Youth Ambassador Day – probably due to the lifestyle adjustments you have to make when type 1 diabetes arrives in your life. But it was very worth it – for three reasons:

1. Jasper has recently felt isolated by his diabetes when he suddenly became aware that he was the only one he knew to suffer from the condition. I wanted to show him that he’s not alone

2. We’ll soon be getting an insulin pump. But we only know the theory of having a child with one, not the reality – yet! So in Jasper’s words we wanted to go meet some ‘pumper’ families!

3. My husband Adie, and I, wanted an accurate update on research – what different angles are being pursued? What are the next steps? And what’s the estimated timelines to finding a cure?

The stunning venue in Painshill Park, Surrey, was filled with parents just like us. We listened to a type 1 diabetes research presentation while the children did fun activities. We quickly got talking to the parents sitting in front of us– and we were happy to find out they were indeed a ‘pumper’ family!

We’d all read in the press about the recent advancement in type 1 diabetes stem cell research. But the presentation taught us this could mean quicker advancements for other types of research too. Like allowing insulin secreting islet cells to be re-created and transplanted while encapsulated in a protective substance, and thereby preventing them from further attack. It could also help with research looking at stopping the immune system from attacking beta cells in the first place.

The cure was mentioned – and we learned that when this will be is difficult to predict at present. It’ll take time, money and research to get there. But we discovered that until we do, JDRF is committed to keeping type 1 individuals healthy and improving their lives. The artificial pancreas could do this.

And so could smart insulin – another key focus of the charity. It would involve only one injection a day and would be released when glucose levels are high, and turning off when levels return to normal. Human trials are starting soon, and JDRF is helping to drive its development so that it becomes available at the earliest possible opportunity for everyone. We want this to become a reality for our son.

Something else that was discussed that I knew very little about was TrialNet, which facilitates sibling testing for type 1 diabetes. We are now seriously considering this for our youngest to see if she presents any of the markers of type 1 diabetes.

We absorbed a lot of information! And the children returned from their activities looking very happy too! They had all been making a film which involved each child saying one thing they liked about diabetes and one thing they had learnt about it. One of Jasper’s answers was that he ‘liked being brave’ – I liked this because all type one diabetes children are so brave. He said he had learnt all about pumps from the families we had met, that he thought they were ‘epic‘, and couldn’t wait to get one like some of the other little boys there.

Mission accomplished! We’ll be back.

I’ve just boarded the type 1 diabetes rollercoaster and I’m tweeting about it. I hope this space offers a place for parents like me to smile and escape the relentless ride.