Verona Press - 9/24/2015

Verona boy to walk for juvenile diabetes

Research fundraiser Sunday helps develop new technologies

Samantha Christian

Unified Newspaper Group

Wearing a red Spider-Man T-shirt, 11-year-old Henry Gabrielski provided a soundtrack for robot action figures while playing with his younger brother, Elliot, 7, inside their Verona home on a stormy September afternoon.

Henry has been diabetic for more than half of his life, which his parents say has made him grow up faster than many other kids his age. Type 1 diabetes is an autoimmune disease in which a person’s pancreas loses the ability to produce insulin – a hormone essential to turning food into energy. It requires constant carbohydrate counting, blood-glucose testing and lifelong dependence on injected insulin.

But Henry’s daily responsibilities have not thwarted his imagination. His father, Jesse, and mother, Joanne Rash, asked Henry to take a quick break from his game to show off what he calls his “Batman Pack.” Strapped around his waist is a continuous glucose monitor, which takes a sugar reading every five minutes and displays an electronic graph of the results.

The last time the Press caught up with the family in 2013, Henry had just received an insulin pump. Now, with the addition of a CGM, Henry can check if his levels are too high or too low in real-time rather than always having to prick his finger. Then he knows when to get a snack or insulin, when to see the school nurse or when to call his parents.

“That has helped,” Joanne said. “Before this technology, we had to wait until he felt symptomatic.”

These new and improved technologies that give Henry more freedom and track patterns were made possible through funding of juvenile diabetes research, which is why his family supports the annual JDRF One Walk.

Walk for a cure

This year’s fundraising walk “to create a world without type 1 diabetes” will be held on Sunday and starts at noon at the Madison Mallards Duck Pond. UW Health is supporting the efforts of the family’s team, Henry’s Heroes, to raise $5,000. As of presstime, all of the Madison teams had raised over half of the $368,759 event goal.

“That’s why every year we walk,” Joanne said. “Because we know that it’s money raised and money invested in technology that can only improve his future … We can only hope that will translate into improved management strategies and ultimately a cure.”

Joanne said her favorite part of the annual event, aside from getting together with friends, family, coworkers and people from church, is seeing everyone walk down the hill together. JDRF Western Wisconsin executive director Jamie Weissburg expects about 3,500 people to participate in the 2.3-mile walk this year.

“You see all these people, and all these kids and all these families that do what we do every day (managing diabetes), which is really great,” Joanne said.

The event also offers many family-friendly activities on the field and the route is an easy walk. Plus, “there’s snacks along the way,” Joanne and Jesse said in unison.

“It’s a really good day for us because then we know we’re not alone,” Joanne said.

Finding balance

Although he has had diabetes since he was 5 years old, Henry doesn’t let his diagnosis slow him down. The Sugar Creek Elementary School fifth-grader also enjoys swimming, baseball, soccer, playing piano and participating in Verona Area Community Theater.

Joanne said Henry sometimes needs to take breaks because diabetes is like a “massive mathematical equation but you don’t always know all the variables,” which may include exercise, mood, different kinds of food and how they are absorbed.

This summer was also the third year he participated in a weeklong camp in Hudson, where all of the kids and camp counselors have diabetes and understand what each other is going through. Among the activities kids participated in were canoeing, ga-ga ball (a variant of dodgeball), rock climbing, tennis and capture the flag.

Henry also learned how to become more independent at camp. There he changed his pump site by himself for the first time, which gave him confidence and energy.

“There is a lot of support for kids who are doing things for the first time,” Joanne said. “It’s really kind of normalizing all the extra that you have to do every day with the diabetes without having to make much fuss about it.”

At the beginning of the school year, Henry also gets up in front of different classes to share what diabetes is (and that it is not contagious) and answer questions.

Henry may not have a superpower to cure diabetes, but he does have some encouraging words for anyone who is facing the diagnosis: “I hope you have a good life; don’t be too hard on yourself.”