Taking part in research - young children and diabetes: Moshe's story

Moshe was 11 months old when he was diagnosed with type 1 diabetes. For a week or so beforehand, he started showing all of the classic four signs of type 1 diabetes. He was getting very thirsty, and his nappy was getting very full. Then he started to get weak and he appeared thinner, too.

One Sunday, we were at the park with friends. At that age, most babies would be crawling or walking around a bit. But Moshe was lying quietly next to us. Our friends remarked that perhaps he was just a sleepy kid.

But by the next day, we were concerned enough to get him checked out. A friend of my wife has a child with type 1 diabetes, so when we went to the doctor, she knew enough to ask for a blood test. After that, we were sent straight to hospital.

On the way to hospital, Moshe suddenly couldn’t fight the ketones and sugar that were building up in his body. The staff at University College Hospital had to treat him, and then he was transferred to Great Ormond Street Hospital to stabilise him.

Then, we went to lessons taught by the UCLH paediatrics diabetes team to learn how to manage the condition.

I don’t think anyone can ever prepare themselves for a type 1 diagnosis. I wasn’t immediately emotionally overwhelmed. But knowing you’ve now got a child with a lifelong condition is really horrid. It was difficult to come to terms with the fact that this was something that’s forever.

At the beginning, we were trying to take it day by day. We had to readjust what we’d previously defined as ‘ok’ expectations of life. Type 1 diabetes was now our reality and we had to do everything we could to keep our child healthy and well. But some days could be quite dark.

As time went on, I struggled with the lack of sleep. There was absolutely no break. The management of the condition is relentless.

When you have a tiny child with type 1 and you’re dealing with the nuances of the amounts of food and insulin they need, there’s just never a break.

As a parent, you’re having to manage the condition, day in and day out, night in and night out, while also trying to hold everything else together in a family and bring in an income and look after yourself, too.

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.

Exeter University study into the very early onset of type 1

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.

The dream of every single parent of a child with type 1 is that there will one day be a cure. It’s like a big puzzle that needs to be solved. As every piece of that puzzle falls into place, we hope we can gradually build enough knowledge to solve the entire problem.

There’s only one way that a cure will come about, and that’s through research. To us, research means hope.

My hopes for Moshe are that, as his parents, we can manage his condition well enough to allow him to be or to do anything he wants. Obviously, he can’t have sweets for breakfast! But whether he can eat something, or do something are never questions asked around him. Our focus is on doing everything in the background to enable him to do and be anything he wants. If he wants to be a circus acrobat, then so be it and we’ll make sure that his sugar levels are managed in a way that allows him that freedom.

Rome wasn't built in a day, and a cure for type 1 diabetes won't be found in one either. It takes a collective effort to get to the result we want. I don’t want to talk up my role too much. Perhaps my role as a patient advisor is just giving these researchers some morale support. Because we’re not going to get the results we want without everybody pitching in.