Ruby Anderson, right, of Yarmouth, will represent Maine at the upcoming Juvenile Diabetes Research Foundation Children’s Congress. Here she tests her blood sugar with the help of her younger sister, Eloisa. Contributed
YARMOUTH — For families of a child with Type 1 juvenile diabetes, disease-related decisions consume nearly every waking hour.
To raise more awareness about the disease and to push for a cure, 9-year-old Ruby Anderson, a fourth grader at Yarmouth Elementary School, will attend this year’s Juvenile Diabetes Research Foundation Children’s Congress in Washington, D.C.
Nine-year-old Ruby Anderson hopes advocating for more research into juvenile diabetes will one day lead to a cure. Contributed
The congress is convened every two years by JDRF and this year’s event runs July 8-10.
The goal of the congress is to allow youngsters with Type 1 diabetes, or T1D, from all 50 states to meet face-to-face with members of the U.S. Congress and other national leaders to advocate for research funding.
The JDRF Children’s Congress has been “essential to securing continued government funding of T1D research and to raise awareness of the daily burden of Americans living with this serious autoimmune disease,” the organization’s website says.
“Delegates … leave the Children’s Congress empowered to use their voices for the change that will improve their lives and the lives of all people affected by T1D,” the website adds.
Donations can be made at www.cc.jdrf.org.
Anderson, who was diagnosed with T1D at age 2, relies on an insulin pump and a glucose monitor. In addition, she also must prick her finger regularly to get accurate blood sugar numbers.
“We make diabetes-related decisions probably every 15 to 30 minutes all day, every day and through the night. It is relentless,” Ruby’s mother, Kelly Anderson, said.
According to the JDRF website, Type 1 diabetes is an autoimmune disease that causes the pancreas to stop producing insulin, which is a hormone that allows the body to get energy from food. Symptoms include increased thirst, frequent urination, itchy or dry skin and unexplained weight loss. Left untreated, both Type 1 and Type 2 diabetes can cause health problems that run the gamut from heart disease to problems with circulation and sight.
Anderson said her daughter’s diabetes diagnosis was a shock because there is no family history of the disease and her two younger siblings don’t have it.
Anderson said her daughter took the initiative in applying to the Children’s Congress, which involved writing a letter to U.S. Rep. Chellie Pingree, D-Maine. Ruby was then chosen from many other applicants to represent Maine.
In addition, Ruby was asked by U.S. Sen. Susan Collins, R-Maine, to speak directly to a Senate Special Committee about her diabetes and how it impacts her daily life.
Anderson, who will be accompanying her daughter to the event, said, “I’m mainly there as Ruby’s assistant. I’ll be managing her diabetes, getting her where she needs to be and getting her to bed to keep up with three very action-packed days.”
“I’m not even 100% sure she knows what she’s got herself into,” Anderson said. “She’s just excited for the adventure.”
Despite the constant need to monitor her blood sugar, Ruby is an active child who enjoys many different sports from lacrosse and tennis, as well as participating in the Girls on the Run program.
She also enjoys being outside and playing with her friends, Anderson said. Ruby has a pet bearded dragon and loves exploring the tidal pools at the beach, according to her mother.
But Anderson said Ruby’s passion is art. “She can always be found drawing and creating.”
Favorite foods include guacamole, and Anderson said her daughter’s preferred sugar pick-me-up is either a honey pouch or jelly beans.
“Ruby is the most positive, joyful kid,” Anderson said. “She isn’t embarrassed about her T1D and is determined to do everything that a normal kid can do. She’s so tough, (always) keeping a smile on her face.”
“We put so much every hour into … just keeping Ruby alive. The more people learn about T1D the more research we can get. All we hope and wish for is a cure in her lifetime,” Anderson added.
Kate Irish Collins can be reached at 780-9097 or kcollins@theforecaster.net. Follow Kate on Twitter: @KirishCollins.
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