PLEASANT PRAIRIE, Wis. (AP) - At 6 years old, Addison Morton is headed to Washington, D.C., to tell Congress and the White House not to cut federal funding for Type 1 diabetes research.
The daughter of Brian and Erin Morton, she is the youngest of five Wisconsin children selected to join more than 150 boys and girls ages 4-17 to participate in the Juvenile Diabetes Research Foundation’s 10th Children’s Congress since 1999, the Kenosha News (https://bit.ly/2sS9WBe ) reported.
Addison and her mother will travel to Washington July 24-26 to attend the biennial Children’s Congress. Brian, a pharmacist at St. Catherine’s Medical Center, likely will join them there, he said Friday.
Like Addison, who had just turned 3 when doctors diagnosed her in November 2013, all the delegates have Type 1 diabetes or, as it’s often referred to, “juvenile” diabetes.
“I’m excited because I’ve never been to Washington, D.C., before, and I also want to find a cure,” Addison said, between breaks from playing with her brothers, Tucker, 5, and Tate, 4.
What would finding a cure mean to her?
“No more diabetes. No more shots. No more pump. No more Dexcom. No more highs and lows,” Addison quickly replies.
Draped in Erin’s lap, Addison cradles her doll “Stace,” whom she introduces as also having Type 1 diabetes. Stace wears her own mini medical ID bracelet, as well as a tiny pump and continuous glucose monitor replicas.
Unlike people with Type 2 diabetes - so-called “adult onset” diabetes - those with Type 1 currently must rely on externally delivered insulin to live.
Most commonly that means injecting the glucose-regulating hormone via hypodermic syringe or increasingly by way of small, portable, electro-mechanical pumps worn on their bodies or attached to their clothing.
Addison rolls up her shirt to reveal an Omnipod by Insulet Corp., affixed with transparent adhesive film to her abdomen, midway between navel and right side. Twisting slightly, she hoists the left side of her shirt just above her waist to show an even smaller device adhered to her back near her hip. It’s Insulet’s Dexcom continuous glucose monitor.
“It watches my blood sugar,” Addison says.
As with similar CGM systems, Addison’s stores and transmits data. Her parents monitor the data using wristwatch-like devices. In addition, Brian’s cellphone displays it via an app.
Traditional glucose monitors are used at least several times daily for the most accurate information and to calibrate the CGM, but the most recent technology enables Addison’s parents to keep an eye on her blood sugar levels day and night. In addition, the data is recorded and retrievable.
Erin recalls how she first suspected a urinary tract infection was causing their daughter to keep soaking through diapers as a 3-year-old until lab tests showed inordinately high amounts of blood sugar in Addison’s urine. Subsequent blood tests proved she had Type 1 diabetes.
As a mother, she found herself crying at thoughts that Addison wouldn’t be able to enjoy the kinds of things other kids love like ice cream, cookies, playing sports and engaging in other physical activities.
“Remember, at that time I had no idea what diabetes is. We’ve come a long way from the beginning,” Erin said.
She says together she and Brian make a great team supporting their daughter, as well as Tate, who has been identified with four of the five known markers showing he is at high risk for developing Type 1 as a child. They agreed to enroll Tate in an ongoing research study that could lead to forestalling onset of the disease or possibly even leading to a cure.
Meanwhile, Addison’s diagnosis apparently has changed their outlooks on life more than her own.
In a handwritten letter to Speaker of the House Paul Ryan applying for selection in JDRF’s Children’s Congress, Addison wrote:
“Diabetes is all I know. I do the same thing as other kids, but I have a pump and a Dexcom. … I want to be a diabetic superhero when I grow up and get a cure. That means you can eat whatever you want without insulin. … I like to talk about (diabetes) and show off my pump and Dexcom. My mom tells me I am already a diabetic superhero. I hope talking about it and showing people will bring awareness and a cure.”
Says Erin, “That’s what we’re going to be talking about in Washington: Special Diabetes Research.”
“They call it ’SDR,’” Brian said. “The federal government puts $150 million a year into it, and they usually fund it for two years. That accounts for one-third of all federal funding for Type 1 diabetes research. This time, we want to see the spending bill renewed for three years instead of two.”
The Children’s Congress focuses on advocacy and entails what Erin anticipates as a steady parade of meetings with congressmen, possibly Administration officials and other influential people in high places. She doesn’t expect their schedule to include sightseeing and fun things to do.
“We’re there for a lot of reasons. We’ve got things to do. We don’t have a lot of down time,” Erin said.
Looking across their backyard, where Addison is leading her younger brothers in exuberantly climbing around an elaborate play set, Erin thinks ahead to their Washington trip.
“She’s a really good advocate for diabetes,” Erin said, smiling. “She has no memory of her life before diabetes. Now, this is all she knows. She’s innocent about it. She doesn’t hold anything back. I’m so proud of her.”
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Information from: Kenosha News, https://www.kenoshanews.com
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