FARMINGTON — Fallon Blackbull is ready to speak to elected government officials about how her life was turned upside down by her Type 1 diabetes diagnosis.
The 13-year-old, who lives in Hosta Butte, will be traveling to Washington, D.C., as the New Mexico delegate for the 2013 Children's Congress program, which starts on Monday. It is run by the Juvenile Diabetes Research Foundation.
The purpose of Children's Congress is to have youth from around the country speak to their senators and congressmen about continuing to fund the special diabetes program, which allocates about $150 million a year for diabetes research, said Cindy Adams, executive director of the Juvenile Diabetes Research Foundation's Desert Southwest chapter.
"The tragedy of Type 1 diabetes is you can't stop thinking about it," Adams said. "You have to be constantly monitoring your blood sugar."
Nearly three years ago, Fallon nearly died from a misdiagnosis. Her mother, Tiffany Blackbull, said a doctor attributed her daughter's symptoms and weight loss to being overly athletic.
During a second hospital visit 10 days later, Fallon was air-lifted out of Gallup en route to an Albuquerque hospital.
"She was sick, and we didn't know she was as sick as she was," Tiffany Blackbull said.
Fallon was in the grips of diabetic ketoacidosis, a life-threatening complication caused by a shortage of insulin.
"My whole life changed when I was diagnosed, I spent my days worried about my blood sugars," Fallon said. "(I) worried about the ranges and so every second of every day, I have to worry about my diabetes."
While the family lives in Hosta Butte, south of Crownpoint, Fallon attends Rehoboth Christian School in Rehoboth. She describes Type 1 diabetes as a day-to-day struggle. She has had to adjust to checking her blood sugar levels 10 to 12 times a day, including in the middle of the night at 2 and 5 a.m.
Type 1 diabetes is usually diagnosed in children and young adults. People with the disease do not produce insulin, a hormone needed to convert sugar, starch and other food into energy, according to the American Diabetes Association.
Fallon said she was excited to be selected to represent New Mexico at the Children's Congress.
"It's a huge honor to be selected," she said.
She is one of 150 youth selected to champion diabetes research. In addition, she will speak about her experience participating in the close-loop artificial pancreas trial. The artificial pancreas is a combination of an insulin pump, which infuses insulin periodically into the body, and a glucose monitor that checks blood sugar levels every five minutes. Advanced software ensures the correct amount of insulin is delivered at the right time.
Fallon traveled to Boston, Mass., to participate in the program. She was the second youngest participant in the trial.
Tiffany Blackbull said her daughter will be part of a congressional group that will speak with the U.S. Food and Drug Administration about participating in human trials on the potentially life-saving device.
Fallon said she wants other Navajo youth to know while her disease has changed her life, it didn't change her athletic abilities or her dreams and goals. She's still active and enjoys playing varsity soccer and running varsity track.
"I think it's important because native children can live with diabetes," she said.