Federal Way sisters Evie, left, and Lilly Tucker show the continuous glucose monitoring systems that tracks their blood sugar levels and reports the results to apps on their phones. The teens, who attend Decatur High School, were diagnosed with diabetes as children and manage their illnesses while maintaining regular lifestyles. Jessica Keller, the Mirror

Diabetes doesn’t slow sisters down

For sisters Evie and Lilly Tucker, living with the challenges of diabetes is something they must endure.

Taking control of their illnesses while maintaining regular lifestyles is a delicate balance for the Decatur High School students, who were each young girls when they were diagnosed, but neither have let diabetes dictate their everyday activities.

Their mother, Charis Tucker, said it hasn’t always been easy.

Of the sisters, Lilly, 14, was diagnosed with type 1 diabetes at age 6 in a harrowing ordeal for her and her family. In the fall of 2009, Lilly started not feeling well and was sick for a couple of weeks. Although she felt better for a couple of days, the night before Thanksgiving, Lilly’s health got worse. Her family called the pediatrician, who recommended Tamiflu, antibiotics and advised the family she drink Gatorade and eat regularly.

On Thanksgiving day, however, Lilly couldn’t get out of bed. Charis Tucker said she knew something was desperately wrong. Her daughter was struggling to breathe, and when she put Lilly in the bathtub, she couldn’t hold herself up.

“I just started sobbing,” Charis Tucker said. “I said, ‘My child is going to die.’”

That afternoon, Lilly’s father rushed her up to Seattle’s children hospital. During that time, Lilly lost consciousness. While the doctors reassured the family their daughter wasn’t going to die, they later determined her blood sugars were dangerously high. Lilly spent 13 hours in a coma, but fortunately sustained no damage to her brain or organs. After spending three days in the intensive care unit, she was moved to a regular hospital unit and then released.

The family was a little more prepared for Evie’s diagnosis.

Although the family had no history of diabetes, at the urging of Lilly’s doctors, the Tucker children were tested to see if they carried antibodies that might make them genetically predisposed for autoimmune diseases and diabetes.

Charis Tucker said Evie tested positive for two, but they were different than the ones her sister had.

Still, when the family heard Evie had the antibodies, they did not panic, although they were told she had a 50-50 chance of being diagnosed with diabetes in the future.

They did not have long to wait.

Less than a year after Lilly was diagnosed with diabetes, Evie, who was 9 at the time, started losing weight and was not feeling very well.

At one point, the family tested her blood sugar, which was elevated but not alarmingly so. A few weeks later, they tested her again after she competed in a swim race. That time her blood sugar was so high it could not be ignored, and she was subsequently taken to the hospital.

“I thought it was kind of fun — a little adventure,” said Evie Tucker, who is now 16. “I didn’t understand what I was getting into.”

With two daughters diagnosed with diabetes, Charis Tucker said any naivete about the illness was quickly erased as she followed doctors’ advice on treatment options and sought to educate herself as much as possible. Gradually, the family formed an understanding about the illness and adjusted accordingly.

Charis Tucker said it was important to not adjust the girls’ lifestyles so much that they could not participate in activities enjoyed by most children, such as Halloween and sports.

With specific treatment, managing their diabetes has gotten easier for the sisters. Evie and Lilly started using insulin pumps — a device worn at all times that dispenses insulin under the skin, replacing the need for daily injections with syringes or pens — and a continuous glucose monitoring system that sends reports on blood sugar levels to their phones.

Despite occasional disruptions, such as trips to the hospital or Evie’s migraines or arriving at school late because of not feeling well, the sisters stay active with friends and school and swim competitively.

“I’m usually very, very busy with swimming and diabetes on top of it,” Lilly said.

An unexpected challenge has come from other people’s reactions to the sisters’ illnesses, primarily because they are uninformed and don’t understand the nature of the illness — why the sisters have to wear a pump or miss school more often than others or adjust their swim practice routine regularly because of their blood sugar levels.

Once, a swim race Lilly was about to compete in was stalled while judges determined her insulin pump wasn’t some other device that would give her an edge over other swimmers, despite her explaining the situation ahead of time to one of the judges.

On top of that, Charis Tucker said, is the realization the sisters’ health could change at any second.

“It is so hard,” she said. “It is so hard that moment to moment we’re making life or death decisions while still making sure they have a normal life.”

Education is key – and one of the reasons why the two girls recently traveled to Washington, D.C., to attend the JDRF 2017 Children’s Congress, along with 150 other children in the United States and six international who are all living with type 1 diabetes.

According to the website, JDRF is “the leading global organization focused on type 1 diabetes.”

The Children’s Congress takes place every two years. While there, the youth delegates participate in a variety of activities, meet with U.S. legislators to discuss type 1 diabetes and stress the need for continued funding for research of the illness. Students share their stories at a congressional committee hearing highlighting their struggles with diabetes and the need for continued funding for research projects.

While the teens were excited to meet with others just like them and hear about their journeys with diabetes and share common experiences, Charis Tucker said the meetings with legislators — and continued funding — are necessary if there is ever to be a cure for diabetes and improved treatment.

“We need to find a cure,” Charis Tucker said, adding gains have been made in treating and curing so many other illnesses, but a cure for diabetes is still a dream at this point. “It’s frustrating.”

For more information on diabetes or the work JDFR is doing, visit jdrf.org.

While the Tucker sisters rely on insulin pump therapy for their diabetes treatment, options and accessories vary significantly. Jessica Keller, the Mirror

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