Protocol dictates that the best is saved for last, the punch line ends the joke, the “A-Ha” moment concludes the story. Special occasions, however, dispel with protocol, and 17-year-old Riley Trainor is a living special occasion. So, this article will begin with her conclusion, gleaned after years of managing her own diabetes, participating in an experimental trial that could revolutionize diabetes care and lobbying Congress for greater support of diabetes research. The one thing above all that Riley would like known about her is this: her pancreas is broken and no amount of treatment, diet, exercise or medicine will ever, ever be able to change that.
Diabetes is an autoimmune disease that affects the body’s ability to regulate the amount of glucose—or sugar—in the blood. Diabetics do not produce enough of the hormone insulin which opens up the body’s cells and lets the energy-producing glucose in; the locked-out glucose, instead, stays in the bloodstream where it can damage organs, muscle and fat.
Riley Trainor has Type 1 diabetes. Typically diagnosed in childhood, this form of the disease impairs the body’s ability to produce insulin and requires regular blood monitoring and insulin injections. Children with Type 1 diabetes can live long and healthy lives with proper management. These kids must perform—multiple times a day—a series of calculations taking in their food intake, exercise output and stress levels in order to determine the amount of insulin they need. It is an attention to detail that would frustrate most adults.
In October of 2003, Riley’s mother, Betsy, noticed her eight-year-old daughter was excessively thirsty and visiting the bathroom a lot but thought these were consequences of having an active child. Significant health issues with another child kept Betsy occupied until, one night, while getting Riley ready for bed, she noticed how gaunt and pasty her daughter had become. Horrified, Betsy took Riley to the pediatrician the next day. A blood test revealed that Riley’s sugar level was 650 mg/dL, dangerously above the normal level of 100 mg/dL. Doctors rushed Riley to an intensive care unit.
Riley describes those first few days after her diagnosis as confusing. “I thought that I was going to have to prick my finger maybe once a day,” she says. The reality of living with diabetes is that Riley has to test her blood before she eats anything. To insure that she is giving herself an adequate dose of insulin, she has to assess her blood sugar levels, what she is going to eat and how much exercise she has had or will have. Stress and hormonal changes also influence her numbers so she has to factor that into her calculations.
The cell-phone sized insulin pump attached to her abdomen with a needle does less than people think it does. Riley explains that her pump is “an open-loop system so it requires human input. I put in my numbers, it does the calculations and injects the proper dose of insulin.” She changes the pump every three days although finding on her petite frame a fatty area unscarred from previous attachment points is increasingly difficult.
Riley also has had to attune herself to how her body responds when her blood levels go high or low—conditions that have dire and potentially fatal consequences. “When I go low, it feels like bugs are crawling on me. I know not to react emotionally so I can focus on responding quickly and properly.” Some mornings, Betsy comes downstairs to countertops covered with spilled orange juice, signs that Riley’s late night studying left her blood levels horrifyingly low. “It really speaks to Riley’s bravery,” says Betsy amidst tears, “that she is in the kitchen alone, sick and trembling, trying to help herself out of the low.”
“Diabetes does not define me, but it is a huge part of who I am,” says Riley. She dances competitively for Studio Bleu and has a formidable academic load with four Advanced Placement classes including Chemistry. This past summer, she shadowed a local pediatrician for a taste of the profession she hopes to join. Her involvement with diabetes, however, goes far beyond her own story. She participates in a pen pal program that connects her with diabetic kids in India. Next summer, she plans on being a counselor at the diabetes camp she has attended for the past few years. “It’s the only places where two hundred kids all prick their fingers at midnight,” she jokes.
Betsy encouraged Riley to get involved with JDRF, a non-profit organization dedicated to serving all people with Type 1 diabetes. Participation in JDRF fundraising walks progressed into being selected as a delegate for the JDRF Children’s Congress in 2011. There, she met with members of Congress and advocated for their support in securing funds for diabetes research. “It takes a lot of effort to get federal funding. It’s a slow and painful process,” says Riley. If they get through that process, however, the rewards could be mammoth, and Riley knows this firsthand. The JDRF is funding research on an artificial pancreas which combines six to ten devices necessary for successful diabetes management into one. Worn outside the body, the artificial pancreas takes real-time blood sugar levels, monitors the body’s insulin levels and dispenses insulin accordingly. Riley spent three days this summer participating in this study at Massachusetts General Hospital in Boston. For three days, she had a break from monitoring her blood. “It was comforting to be able to go to sleep without having to worry about being low,” she says.
Riley’s experience with the artificial pancreas was overwhelmingly positive. Researchers believe that this technology could be available to the public in three to five years. The biggest variable is having enough funding to finish the trials. As she notes in her blog, “The only thing that is going to slow down this project is the lack of funding. My hopes are to raise money to help the project continue.”
Given the kindly determination, warm assurance and buoyancy of spirit that seem to be Riley Trainor’s trademark, that hope will surely be met.
For more info about the Artificial Pancreas project at Massachusetts General, please visit their website at www.artificialpancreas.org.
Photography by Christy Jenkins Photography; Makeup/Hair by Meredith Ehler
Jessamyn Ayers writes and lives in Loudoun County with her husband and two children. Her perfect day includes some combination of reading, writing, running, working her dogs and baseball. In addition to her fiction writing, she maintains the blog “The Curveball Contingent” (curveballcontingent.blogspot.com).