News From Terre Haute, Indiana

Local & Bistate

March 9, 2014

Canvasing families: Mothers confront life with diabetic children

TERRE HAUTE — Four Wabash Valley mothers who sat around a circular table Thursday night couldn’t hold back tears as they talked about their children’s battles with a lifelong disease and their hopes for helping other affected families.

Inside a house north of Terre Haute, Melissa Stigall, Laurie Taylor, Kim Bryant and Cassie Hansel took turns sharing stories of how their lives were changed by Type 1 diabetes and how their shared commitment to fight back has led them to form a new  local charity, “Type 1 Diabetic Moms” or T1DM.

‘Shock’

As she sat on her couch, Cassie recalled the terrifying events leading up the diagnosis of her then 12-year-old son.

The boy, Josh Cannon, was diagnosed two years ago after experiencing symptoms such as frequent urination, increased thirst, leg aches and weight loss. He even lost 12 pounds in a week.

At first, Cassie said she attributed the symptoms to just “a bug” or growing pains, but she still sought medical help.

One day after work, “My mom called me on the phone and was just hysterical,” she said.

“I heard Josh screaming in the background,” Cassie said. Her mom told her to go to the emergency room.

“You have to go now. It’s an emergency,” she was told.

When she got to the emergency room, “Josh was upset and they took him back … and they did an Accu-chek, and it wouldn’t register,” which means “the blood sugar is too high to read,” she said. “When I looked down at that Accu-chek and saw the error code, I just had to excuse myself.”

After the medical team did a blood test, the family was told that Josh’s blood sugar was “over 900, nearly 1000.” Cassie, a nurse, was just in disbelief.

Afterward, the team from Indianapolis-based Riley Hospital for Children came by ambulance to a local hospital to transport Josh.

“By the time they came, he was unconscious,” Cassie said. “More than likely … if he would have [gone] to bed that night, if we wouldn’t have taken him to the doctor that day, he probably would have died that night.”

 Josh spent four days in Riley and had to take some time to come to terms with the discovery.

But the story doesn’t end there for Cassie or the other moms whose children were diagnosed with Type 1 diabetes.

“When you find out, it is never the same,” Laurie said of her daughter, 7-year-old Gracie’s, diagnosis in 2011.

And her friend, Melissa, explained just how different.

“You have this life and normal struggles with kids … and then truly out of the blue you get hit with ‘You gotta go to Riley Hospital. It’s an emergency. Take your kid right now and pack your bag because you’re gonna be there for three days,’” Melissa said, emotionally recounting the moment her son, Gavin, was diagnosed, May 8, 2013.

“And then you are told at that point that your kid has Type 1 Diabetes and that there’s no cause, there’s no cure,” she said after reaching for a tissue from a box on top of the table.

“You have to learn how to give a shot [for insulin], you have to learn all these calculations, you have to learn carb counting, you have to learn emergency plans and then emergency plans for those emergency plans,” Melissa continued.

The other moms around the table understood exactly what Melissa was saying.

“I think what she is trying to say is, at that moment, everything that you thought that was important in your life changed,” Kim said.

Her son, Jared, now 15 years old, was diagnosed over summer break in 2011. “We went to Riley, and our lives changed forever.”

“I remember standing in the kitchen, I remember just putting my hand over my mouth and taking a breath and I don’t remember breathing again,” Kim said. “I was in shock.”

‘I just need to make sure that he’s breathing’

Type 1 diabetes is a chronic, lifelong disease, which occurs when the immune system destroys insulin-producing cells of the pancreas, according to various medical sources.

Files provided by T1DM state that approximately 5 to 10 percent of the 3 million diabetic Americans have Type 1, in which the body does not produce insulin, a hormone needed to convert sugar, starches and other food needed daily. The insulin opens the cells to receive sugar, and if they are not open, sugar levels in the blood begin to rise, which is called hyperglycemia. Hypoglycemia is just the opposite.

According to the American Diabetes Association, Type 1 diabetes is usually diagnosed in children and young adults.

And effects of Type 1 are felt by families every moment of every day.

Inside her kitchen, Cassie had charts that monitor Josh’s sugar, binders that chart his every food intake, boards, calendars, reminder stickers and cabinets filled with Josh’s medical equipment.

“It’s just a bunch of stress and needles,” Josh said of his daily routine.

But he has learned to cope with this addition to his life. “You just don’t think about it,” he said.

But the mothers do think about it. A lot.

Kim, who lives in Vermillion County, checks on her son every night.

“I just need to make sure that he’s breathing,” she said.

According to T1DM, about 6 percent of Type 1 diabetics die annually from the “Dead in Bed” phenomenon, “caused by a severe hypoglycemic event in which the diabetic does not feel the symptoms of low blood sugar and never wakes up.”

As everyday life now includes poking needles and counting carbs, the moms had to plan every activity, including school.

“Sending her [Gracie] back to school was very scary,” Laurie said, as tears streamed down her face.

“When she would go low [in her blood sugar levels], I would go get her because I was afraid,” she said, her voice trembling.

‘Same life’

“We have the same life, as a mother of a diabetic child,” Kim said.

This shared experience bound the group together and formed the charity not only to support each other but also others in the Wabash Valley. They welcome individuals and families afflicted with the disease to join their cause.

“Originally, the women of T1DM came together as a means of emotional support for one another following the devastating diagnosis of Type 1 Diabetes of our children,” according to the group’s purpose statement.

Melissa and Laurie got together first in the summer of 2013.

“I called her [Laurie] crying on my back porch,” Melissa said. “I don’t know what to do.”

Having walked down the same road, they now want to reach out to help other families by sharing their knowledge and experiences.

Through the charity, which will host a monthly support group, they want to share tips on how to manage their family member’s diabetes daily.

In addition to providing emotional support, they hope to provide financial assistance to families to offset the cost of expensive medical bills, diabetic supplies and food necessary to treat low blood sugar and continuous glucose monitors and diabetes alert dogs to hopefully avoid the Dead in Bed” phenomenon. The charity held its first fundraiser, a Wine and Canvas event, on Saturday at the Sandcut Firehouse.

The women have also said they plan to donate proceeds from fundraisers to research for a cure for Type 1 diabetes, which experts said may be at least 25 years away.

“In the meantime, our children will continue to stab their fingers four to six times a day and inject themselves with insulin four to six times a day to stay alive,” according to the purpose statement.

“The only thing that will save their lives is multiple injections of insulin throughout the day or by wearing an insulin pump, not a change in eating habits or by exercising more,” Cassie said, of the common misconception about Type 1 diabetes.

“I just want my child to live a very long, healthy life. And Type 1 diabetes will make that harder for him,” Kim said.

But together, they are ready for a fight against the disease.

“Whether people in a higher power, which we do, we feel like a higher power brought this specific group together,” Cassie said.

Tribune-Star Reporter Dianne Frances D. Powell can be reached at 812-231-4299 or dianne.powell@tribstar.com.

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