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“I was sending a seven-year-old to school with a drug that could kill him,” says Alistair Samuelson, whose son George, now nine, has type 1 diabetes.
Frustrated with traditional monitoring and its risks, Mr Samuelson and George have since joined a growing group of T1 sufferers who are building their own solutions to manage their diabetes – even though they come with their own uncertainties.
Traditional monitoring involves taking blood samples from the fingertips several times a day and administering precise injections of insulin to maintain blood sugar levels. However, over the course of an hour they can change dramatically and too much insulin can be fatal.
It works for many – new British Prime Minister Theresa May has talked openly about living with type 1 diabetes since her diagnosis in 2012.
“In basic management terms, it’s the same for everybody,” she told Diabetes UK in an interview.
“You have to get into a routine where you are regularly doing the testing.”
But Mr Samuelson and George are among thousands who have chosen a different approach.
They are using Nightscout, an open source platform developed and run by a global community of type 1 diabetics.
Open source means it is freely available for anyone to use and modify – in this case at their own risk.
It’s a combination of a commercial product called a Continuing Glucose Monitor (CGM), which provides constant updates, a DIY transmitter and the freely available Nightscout programming code which enables the CGM data to be shared with a cloud data storage area – where it can then be distributed to other devices.
So both father and son now receive constant updates on their phones (and George’s smartwatch) and are able to assess George’s needs minute by minute.
It has given George the gift of freedom – he can now join his friends on sleepovers and enjoy his favourite sports.
Mr Samuelson acknowledges that it is not without risk.
“I am using open source software to do calibrations. Open source software is giving me final numbers and it is not an approved algorithm – it’s not going to be exactly the same as the proprietary algorithms,” he says.
“But you have to make an informed decision… compared to all the other risks the benefits massively outweigh them.”