Parents Maddie and Rob Julian knew something was wrong with their baby son Otis but they couldn’t put their finger on what it was.
The 20-month-old had a series of antibiotics to treat infections, would wet through all nappies and was losing weight. It was left to a family friend to offer the first diagnosis of a life-changing condition.
“Otis (pictured below) was tired all the time and wanted to be in the pushchair – completely different to my second son, who is full of beans,” Maddie told BusinessCloud. “The final straw was Halloween: I’d just changed him into a skeleton costume, took him to a party and an hour later he was drenched up to his neck.
“My nurse friend said: ‘Maddie, you need to get him back to the doctor – I’m worried he might have diabetes’.
“He was later diagnosed by a blood check at our GP’s surgery and then went straight to the CAT unit (Children’s Assessment and Treatment Unit) and they were very, very quick to act. He was on insulin within hours and the training in hospital was amazing.
“It never leaves you really, that diagnosis – because that was it, forever: he’s on insulin.”
Ninety-five per cent of children diagnosed with diabetes have type 1, whist around ten per cent of all diabetes sufferers in the UK have type 1. According to Diabetes UK, around 4.6 million people are living with all types of diabetes in this country, almost a million of them undiagnosed.
Whereas the type 2 version of the condition is developed by the sufferer and is often linked to lifestyle choices, type 1 is an autoimmune condition which cannot be reversed and has no link to diet or lifestyle.
In effect, the body attacks the beta cells in the pancreas preventing them from creating insulin.
“We’re not sure how much of it is hereditary at the moment,” Maddie explained.
To illustrate the rarity of type 1 in children, Maddie says there are around 500 children in Leeds. A lack of understanding of Otis’ situation led her and Rob – whose background is in film production – to take matters into their own hands.
“The hospital had been brilliant but when we went out of hours, we didn’t feel there was enough specialist knowledge and we were really keen to know more,” she said. “We’d have to recap everything we’d learned in hospital, which was incredibly complex.
“We didn’t want to keep contacting the clinic; we just wanted to be able to view the information we needed and train our extended family so that they could keep our son safe. That’s when we decided to set up DigiBete in early 2016.
“Even we were struggling, so we asked: how do we teach grandparents [how to deal with someone with type 1]? Nurseries? Anybody who needs to take this massive responsibility, where their little lives are in your hands?
“Any day of the week you could have a serious hypo or hyper and be in critical danger and have to be in hospital. It’s a huge responsibility to give anybody.
“We wanted to create a package of support.”
Otis is now four and at pre-school. He has a CGM – continuous glucose monitor – injected into his back which allows his parents to keep track of his blood glucose levels on their phones. Maddie says his glucose levels are “absolutely brilliant”, while an app is also in development as part of the platform’s commercialisation phase.
The site, which has partnered with the Leeds Children’s Hospital and works with Diabetes UK and the Juvenile Diabetes Research Foundation (JDRF), has around 19,000 users. DigiBete will also work with the National Diabetes Network – which has 105 clinics all over the country – on projects from February.
DigiBete has been based in the co-working space at the state-of-the-art Platform building overlooking Leeds Train Station since May.
“Platform enables lots of really great discussions with people – it allows us to live within a health-tech ecosystem,” Maddie added.
“We will be at Platform for a long time because this is where our growth hub is and where lots of other health tech businesses are growing.”