While most little boys are asking Santa for toys for Christmas, four-year-old Jack Sekel is asking for a life-changing medical device to help manage his Type 1 diabetes.
The Sekel family began their journey into the world of diabetic management this summer when then three-year-old Jack became extremely ill. They took him to the doctor and learned that he was in a state of diabetic ketoacidosis and his bodily systems were beginning to shut down.
Jack was diagnosed with Type 1 diabetes on Fathers Day 2018 and would spend a week in the hospital recovering as his parents were taught how to test blood sugar levels, calculate carbs and give insulin injections.
Every day, Jack needed two long-lasting insulin injections plus fast-acting insulin injections every time he ate. In addition to that, Jack needed finger pricks every few hours to test his blood sugar levels.
It was quite an adjustment to the entire family’s life. Mom and dad were not only juggling a four year old with a life-threatening illness, but also a baby.
Jack’s mom Haley Sekel says it was hard learning to make herself poke her precious little boy with a needle over and over again.
“He was such a trooper,” Sekel said.
Jack now has an insulin pump attached to his arm and gets to skip the constant barrage of needles. When he eats, his parents have to calculate the number of carbs in his food and then tell the pump how much insulin to administer.
“Because he is four, he eats all over the place, so this pump has made it way easier,” explained Sekel. “We were having to restrict his eating with the injections, because we didn’t want to have to poke him that much.”
But even though the pump has made life easier, there is still one more device that could be life-changing for the family — a continuous glucose monitor (CGM).
Jack’s blood sugar still must be taken every few hours, day and night.
Sekel said Jack is the bravest four year old she has ever seen and that even though his little fingers are filled with marks and holes, he has even begun doing his finger pricks himself.
Sekel explained that the many variables, such as making a carb calculation mistake or if Jack’s pancreas suddenly starts working again, mean that Jack can get into trouble really quickly.
As the name implies, the CGM continuously monitors blood sugar levels. It also analyzes trends and sends the data to a smart phone.
“Instead of poking his finger 15 times a day, the device would just tell us what his blood sugar is,” said Sekel.
The device has an alarm, so that would also mean that they would not have to wake Jack several times a night to check his sugar levels.
“Our diabetic team is adamant that we get this,” said Sekel.
But there is a catch — the $7,000 device is not covered by either of the parent’s Blue Cross insurance plans or by any government source.
“We are kind of stuck,” said Sekel. “We are not in a place where we can afford to get a $7,000 device.”
The Sekels have appealed to their insurance company and to the government, but to no avail.
“Every research paper I have read about Type 1 diabetes has said that every human with Type 1 diabetes in 2018 should have a CGM and that they should be covered,” said Sekel.
“So I am not sure why Blue Cross is not doing that and why our government is not doing it. It seems kind of crazy when that kind of technology exists and it could save his life.
“If we missed a low in the middle of the night, he could just go into a coma and that would be it — he could be gone,” she said. “It is scary and stressful.”
The device would also enable insulin to be given at more ideal times and in more ideal doses.
“Basically, it would help us manage his blood sugar better, so he has a longer life,” added Sekel.
Meanwhile, the family continues to endure sleepless nights, finger pokes and a stress and fear that most people can’t imagine.
But that doesn’t stop them from hoping for a Chrsitmas miracle.
A GoFundMe campaign has been started to help the Sekel family purchase the monitor. Just go to gofundme.com/jack-sekel-cgm to donate.