ROCHESTER, N.Y. — John Costik of Livonia developed digital technology nine years ago to read a glucose monitor and deliver information to the cloud so that he and his wife could monitor the vitals of their son, Evan, from a distance to ensure his safety. Evan was diagnosed with Type 1 diabetes when he was just 4 years old.
That same technology helped them when their daughter Sarah was diagnosed with Type 1 in December 2021.
She can play her music anywhere, even in the kitchen. All Sarah needs is to flip open her laptop and any room is filled with a warm techno-vibe. The audio meters on her music composition program rise and fall with an ease that reflects Sarah’s ease with what she's sharing.
That's not yet the case with the new daily factor in Sarah's life. It's one reason this Livonia High School student has yet to compose lyrics for the new challenge she, and her family, face.
"I feel it is a little odd to write about. It’s a different situation than most people typically write songs about," said Sarah, as she prepared sheet music for play on the electric piano in her basement.
Sarah's music set up is a keyboard's length away from her father's workspace; a place where computer hard drives and monitors are at work, cycling through some of his latest digital engineering work; something sure to change lives; though likely, not as much as John's most far-reaching life hack.
It's one that immediately helped Sarah, who in December of last year, learned she will live - with Type 1 diabetes.
"In seventh grade, I did presentations to teach people, to explain to people what Type 1 diabetes was and how it was,” Sarah said. “Little did I know that I know a couple of years later I had to I would do it because I had to.”
"It kind of hits you all at once all of the emotions that she’s going to have the extra work she’s going to have to do," Sarah's mother, Laura Costik, said. "And it crashes down on you all at once."
Type 1 diabetes is a full-time commitment to keep tracking of every carbohydrate, blood sugar reading and shots of insulin. But thanks to Sarah's dad, she and her parents can track it on their phones.
It is part of a "MacGyvered" digital solution John came up with nine years ago, when his family needed it the most.
As an engineer in the field of pharmaceuticals and health care, John wrote code to lift data from a glucose monitor — like Sarah's — and make it available, first on a laptop, then to the cloud, in real-time. It helped them while they worked and while those with the condition were elsewhere; whether at school or daycare.
The tech, which started as a family-designed solution in a fishing tackle box, makes choosing a snack — and when to eat it — a lot easier.
"So I can see both my blood sugar and my insulin dosage,” Sarah said. “I can see the insulin I’ve just given myself instead and my blood sugar levels and what it is now.”
"It’s on our watches it’s in our phones," John said. "So we can check-in and then back to have their backs."
The app that's emerged, known as the NightScout project, even helped John and Laura diagnose Sarah's diabetes in December. A week, or weeks-long process to acclimate new Type 1 patients in the hospital was reduced to a couple of days.
The Costiks knew they could count on it because they'd been using it for nine years prior to Sarah's diagnosis. John had developed it for their son Evan. It's made diabetes a nuisance, instead of a life-threatening struggle.
"I realize what a blessing that technology is in little pieces every single day,” Laura said.
It's a blessing that even allowed Laura and John to run a marathon, without worrying about their kid’s chronic condition.
The open project continues to evolve. John put his technology online for all to learn from and use before it was mainstreamed. Other scientists and families contributed to its growth to the point now where the tech John turned to is much more universally available.
And it helps prove that people with Type 1 diabetes, and their families, can hack it.
"It still feels like a project for school," Sarah said. "For school I can wear all this to teach people something. But in reality, it’s just part of my life now."