When Samara was just 5 years old, her mother, Lana, was concerned she wasn’t growing as much as she should be. After an appointment at Children’s Hospital Colorado, Lana’s fears were confirmed. Samara was diagnosed with celiac disease.
Celiac is an autoimmune disease that causes damage to the small intestine and makes it harder for the body to absorb the nutrients from food – the reason why Samara wasn’t growing.
“When she was first diagnosed, she would bring her large teddy bear to the hospital, and he was bigger than she was,” says Lana.
While the diagnosis was overwhelming, Samara’s mother said that her doctors were exceedingly helpful and offered support groups to assist the family with the news.
Small in size, big in courage
Celiac disease can cause some children to grow poorly, and living with the disease is often difficult. But Samara, now 12, takes each day in stride. She enjoys figure skating, playing violin and going to school, just like other kids her age. Even though the school cafeteria can be challenging to navigate with her food restrictions, Samara knows how to deal with tough situations and be courageous.
“Courage means not being afraid of what other people think of you,” says Samara. “I feel like sometimes people receive judgement they don’t deserve, but everyone is different so it shouldn’t matter.”
Children’s Colorado has allowed Samara to live a normal life and has helped her to grow in more ways than one.
'They make you feel special'
The Colorado Center for Celiac Disease (CCCD) at Children’s Colorado has helped Samara learn and understand how to live with celiac disease. While she may miss eating pizza every now and again, dieticians and support groups have helped Samara and her family adapt to a gluten-free diet and learn how to overcome the other challenges that come along with the disease.
“The doctors there not only talk to my parents, they talk to me, too,” says Samara.
The CCCD is one of the first – and best – programs in the Rocky Mountain region. It is raising the bar for other celiac programs by focusing solely on pediatric occurrences of the disease and gluten sensitivity. The CCCD has become a leader across the nation by setting the standard for multidisciplinary care of children with celiac disease and gluten-related disorders by concentrating on the specific needs of a pediatric population.
“They don’t just take care of you, they make you feel special,” says Samara. “We’re always in really good hands.”
Research fuels hope
As one of the nation’s leading pediatric gastroenterology, hepatology and nutrition programs, the Digestive Health Institute (DHI) at Children’s Colorado is committed to advancing knowledge and clinical care to improve the health of its patients. Through basic, translational and clinical research, the DHI is discovering the underlying mechanisms of digestive diseases, developing new diagnostic tests and assessing innovative therapeutic interventions.
The DHI is also conducting a unique population-based study of celiac disease. This research has shown a much higher prevalence of celiac disease in the United States than previously known. Translational studies, a type of research designed to transform findings into useful medical practices and significant health outcomes, have pinpointed new blood tests for celiac disease and have unearthed a relationship between the development of celiac disease and diabetes.
These studies could mean finding the underlying causes of celiac disease, and eventually, a cure. This wouldn’t be possible without generous donations that help to fund pioneering research at Children’s Colorado. Donors not only make research possible, they also make hope possible. And that makes all the difference for patients like Samara.