Getting involved in research
Around six months after Moshe’s diagnosis, we were referred to a three-month study by Cambridge University on DIY closed loop systems. Within two days, with computerised decision making, we were able to have a night’s sleep.
Seeing the system keeping our child safe was incredible. Not only could we sleep, but we could sleep anxiety-free. We didn’t have that fear that we might have missed an alarm warning us that Moshe might be going into a severe hypo.
Following that study we moved onto using an OpenAPS system, a type of DIY closed loop system which uses a small computer and battery pack, to safely manage Moshe's blood sugar levels.
After the first research study, we were contacted by a team from Exeter University. They were looking for blood samples from children who were diagnosed at a very young age. The aim of the Exeter University research is to get a better understanding of the genetic make-up of early onset type 1 diabetes. The researchers are trying to understand whether onset could be delayed or possibly even find a cure.
For us, taking part in the research was extremely straightforward. Researchers came to our house to take a blood sample from Moshe. We timed their visit to coincide with his afternoon nap, so he was asleep the whole time. The sample was then immediately couriered to a university in London.
Later, I was asked to become a parent representative on the research team. I now join their meetings every six months.
The team faces a bit of a challenge around being able to compare a blood sample from a very young child with diabetes with a blood sample of a child of the same age without diabetes. It’s very easy for parents who have a child with a condition like type 1 to allow a needle to be poked into them for the purposes of research. We're used to testing their blood sugar levels. But for a family with a child without diabetes that could be a little more daunting.