Sergey Kashchavtsev

The first year was a disaster, the second was a real achievement, and the third was a new normal. This is what Sergey wrote as a caption to a video of his then ten-year-old daughter Maya singing a Billie Eilish song. Posting the cover on his social media page was his way of “celebrating” the third anniversary of Maya’s diabetes.

The story began when she was coming to the end of her first grade. During a routine health check, elevated blood sugar levels were detected. A hospital visit followed, with a million different tests and a diagnosis: type 1 diabetes. This meant that her pancreas had stopped producing insulin, which is vital for the body’s functioning. Permanent measures would now have to be taken to deal with this because, despite medical progress, diabetes is still incurable.

In the early days, all food became the enemy. You have to calculate the carbohydrates you’ve consumed, constantly working out how much insulin is needed to compensate. Too little insulin and you’ll have high blood sugar and ketones. Too much, and you’ll get hypoglycemia (low blood sugar). Both outcomes make you feel unwell, and proper management of diabetes means maintaining blood glucose levels within a narrow optimal range on behalf of the pancreas.

An artificial pancreas system (APS), which consists of a blood glucose monitoring sensor, an insulin pump and an insulin delivery app, helps to maintain this balance. “Eighteen months to two years ago, mass market APS solutions began to appear on the market, making life easier for beginners. Now you can just go and purchase a readymade system. When we were learning to live with diabetes, we had to figure everything out for ourselves. Fortunately, there is a large international diabetes community, with volunteers working to develop and improve APS software and hardware all the time. To build a custom APS, I had to make the leap from C++ to Swift,” Sergey recalls.

He shared his solutions with other parents of diabetic children, and still does to this day. At one point, as many as 300 people were subscribed to his iPhone build, after finding him through a Facebook* group aptly named Diapapa. There, Sergey talked about what it was like to live with a child with type 1 diabetes, sharing life hacks, advice and scientific research.

It wasn’t just Sergey, but Maya too who helped to raise awareness. She found her first audience at school, explaining to her classmates what diabetes was, and why it wasn’t contagious and didn’t stop people from living full lives.

After that, she gave a report on diabetes at a convention for endocrinologists – at the age of eight! – and then on the popular Russian TV show Live Healthy. Maya is very sociable and knows how to get people interested.

She’s 15 now, and diabetes has become a routine, if unusual, way of life. Laughing, Maya describes herself as a cyborg and surprises doctors with her perfect diabetes management: her blood has the same levels of glycated hemoglobin as people without diabetes. That feeling of disaster from the early days has passed, giving way to lots of new habits and an unshaking self-discipline.

“When you’re still coming to terms with a diagnosis, you might encounter charlatans who promise to cure diabetes for exorbitant amounts of money,” Sergey cautions. “Don’t believe them. This is an incurable disease for now, but it’s perfectly possible to live with it. It’s just a question of making the effort, day after day.”

*Meta (operator of the Facebook social network) is currently banned in Russia as an extremist organization.