with Type 1 diabetes
The American Diabetes Association estimates that 1 to 3 million people in the United States have Type 1 diabetes, and more than 80,000 children around the world develop the disease each year. Those statistics hit home for Portsmouth city councilor Stefany Shaheen. Her daughter, Elle, was diagnosed with Type 1 diabetes in 2007.
“Her illness dominated our lives,” said Shaheen, who describes herself as a “type A mom.” “And, if we weren’t testing or travelling to the hospital, we were ensuring that Elle’s diet and exercise were helping her live the best life she could.” Each day, Elle and her family were reminded of the illness. “I became not just her mother, but her nurse,” Shaheen said. “That added role affected our relationship.”
And then a service dog named Coach joined the family. Shaheen details the family’s journey in navigating the difficulties of life with diabetes and how Coach helped Elle live more independently in her memoir, “Elle & Coach,” which will be released on Aug. 25. A book release party will take place at 3S Artspace in Portsmouth on Aug. 27.
When Elle was 8 years old, Shaheen noticed something had changed. “She had become lethargic, losing weight and gaining a constant thirst,” she said — all symptoms of Type 1 diabetes. A doctor confirmed the family’s suspicions. Type 1 diabetes develops when the pancreas produces little or no insulin, which regulates glucose in the body.
The diagnosis changed her family members’ lives, Shaheen said. Their days became filled with checking Elle’s blood sugar levels and other tests and tasks that keep the disease under control. Vigilance became a necessity: complications from Type 1 diabetes can result in heart disease, stroke, kidney failure, and more. “We would have to wake Elle up in the middle of the night and check her blood sugar levels. We were on constant watch,” said Shaheen.
Elle agreed to take part in a variety of research programs aimed at finding both the cause of and a cure for the disease. Shaheen said her daughter didn’t want the disease to define who she was, or the lives of people around her.
“I know that Coach is looking out for her. It’s an added layer of protection that I never thought we would get.” — Stefany Shaheen
Since her diagnosis, Elle has balanced trips to the Boston Children’s Hospital and the Joslin Diabetes Center, as well as constant blood sugar tests and insulin injections at home, with the everyday activities of a growing young woman in a busy family of six. According to Shaheen, the routine was taking its toll on Elle and the family. Then she started researching medical alert dogs, a type of service dog trained to alert people with diabetes when their blood sugar levels are too high or too low.
Coach, a Labrador trained by Sarah Holbert at Canine Assistance Rehabilitation Education Services (CARES), joined the family in 2012. The dog changed Elle’s life, Shaheen said.
“It’s given her an independence,” said Shaheen. “I no longer have to constantly say, ‘Have you tested yourself? Have you taken your insulin?’ I know that Coach is looking out for her. It’s an added layer of protection that I never thought we would get.”
Together, Elle and her mother decided to chronicle their experience in a book, hoping that other people might benefit from Elle’s story. Soon, they began writing “Elle & Coach.”
“We hope to inform and share information about Type 1 diabetes, and to dispel some myths about the disease and the work of medical alert dogs,” said Shaheen. “As a mother who has watched her child suffer, I wanted to let people know they are not alone and that they may also be able to gain some relief as a family — and independence for their child.”
“Elle & Coach,” by Stefany Shaheen and Mark Dagostino, comes out Aug. 25 and will be available at local bookstores. A release party for the book takes place Thursday, Aug. 27 at 5:30 p.m. at 3S Artspace, 319 Vaughan St., Portsmouth.