Seeking a cure for diabetes in D.C. Midlander, 12, traveling to Capitol to share story

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LaPradFrom the Midland Daily News

Outgoing and adventurous, 12-year-old Bethany LaPrad will head to Washington, D.C., this week to talk with legislators about life with type 1 diabetes.

She was selected as one of 150 kids who will attend the Breakthrough T1D Children’s Congress, which brings children from across the country together every two years to talk with members of Congress. The gathering takes place Monday through Wednesday, and is part of Bethany’s busy schedule this summer.

Bethany’s experience is unique because in addition to type 1 diabetes, she also has phenylketonuria, or PKU, a condition that inhibits her body’s ability to digest certain kinds of protein. Her mom, Sandy, said they have only been able to find four other people in the world diagnosed with both diseases.

“Since I’m unique with this, if they don’t find a cure for diabetes, then it’s just going to be a lifelong — ongoing, ongoing — process,” Bethany said.

The Breakthrough T1D Children’s Congress takes place to represent all children with diabetes who will face a lifetime with the disease, Sandy said. Not all parents can afford supplies or have access to clinics that provide specialized support for children with diabetes, she said. Caring for the disease can be difficult. As a nurse, Sandy may be more prepared to help care for Bethany than the typical parent. The options for care have improved over the years, Sandy said.

“It’s come a long way,” she said, with insulin pumps helping to supply insulin to the body, but there is more improvements to treatment that need to be made.

Bethany is ready to share her experiences in Washington, D.C.

“They’re going to get all the kids together and we’re going to march, probably holding up signs,” Bethany said of the Breakthrough T1D Children’s Congress. “We’re going to talk to the senators and congressmen about why they should fund diabetes research and look for a cure.”

Bethany made scrapbooks for the legislators to tell about her life with diabetes, hoping they will be a lasting reminder of her message.

“I hope my story sticks out to them personally so they know that kids with more than one disease, with more than just diabetes, can do anything that kids with no diseases can do,” she said.

The Breakthrough T1D Children’s Congress will be led by Breakthrough T1D International Chairman Mary Tyler Moore and will include a hearing during which Moore, select delegates, researchers and community leaders will testify on the need for continued funding for type 1 diabetes research, under the theme of “Promise to Remember Me.

Children were selected to attend the event by a volunteer-based committee, led by Angie Platt, chair of the 2013 Breakthrough T1D Children’s Congress.

“After reviewing the submissions from all of this year’s applicants we were overwhelmed by their commitment to making an impact for people with type 1 diabetes,” Platt said in a news release. “Choosing just 150 delegates from the pool of nearly 1,500 applicants for this year’s Children’s Congress was an incredibly challenging process.”

Bethany’s rare combination of diseases means she has to carefully plan what she eats.

“She eats completely differently than the typical diabetic because she can’t have the protein, she can’t have the cheese, she can’t have the milk,” her mom said. “She’s a total vegetarian for the most part, with her own special baked products. We have to weigh things on a gram scale. She has a formula that she drinks to get all of her modified protein.”

It can be a lot of work, but it hasn’t stopped Bethany from living a full life.

“It’s not a debilitating disease,” her mom said. “She lives a normal life for the most part.”

This summer, Bethany has already wrapped up a volunteer mission trip and a week at the American Diabetes Association’s Camp Midicha in Fenton. She is quick to make friends at camp, where she gets to use the zip line, go horseback riding, swim and climb on the high ropes course.

Bethany sings in a choir with the Midland Center for the Arts and loves the spotlight during drama productions at Bullock Creek Middle School and Messiah Lutheran Church. She is on the student council, which last year organized a middle school penny war that raised $538 for juvenile diabetes. When she grows up, she wants to become a pediatric endocrinologist, a specialist who can help children with diabetes and other disorders of the endocrine system.

For more information about Breakthrough T1D, visit www.breakthrought1d.org