Nikolas was born with an omphalocele, a birth defect of the abdominal wall. For Nikolas, this meant that his bowel and liver were outside his abdomen. He spent the first four months of his life in the Neonatal Intensive Care Unit. Within a few days of his birth, doctors discovered that Nikolas had a congenital heart defect called a coarctation of the aorta. He would need heart surgery when he was just 12 days old.
Lauren has obsessive-compulsive disorder, a disorder in which people have recurring, unwanted thoughts, ideas, or sensations which make them feel driven to do something repetitively, like wash their hands or check the stove before leaving the house to make sure it’s off. Lauren also has anorexia, an eating disorder characterized by an abnormally low body weight and an intense fear of gaining weight.
Noa & Romi’s story
Noa and Romi both have allergies. Romi is young enough that allergies don’t really mean anything yet except that she can’t enjoy falafel with the family on falafel night because she is allergic to sesame and has to eat something different. Even so, her allergy does not hinder her quality of life. Allergies have defined Noa’s life. Born with an intestinal malformation that necessitated four difficult surgeries, she has been resilient and strong from the outset. The second battle of her life, an anaphylactic allergy to dairy products detected when she was in the hospital for surgery, has required constant advocacy on the part of her parents.
Billie has generalized anxiety disorder, characterized by excessive and ongoing worry that interferes with activities of daily life. She is hyper-aware of her surroundings and feels constantly on edge. Through therapy, Billie has learned that, although she cannot change her thoughts, she can change the way in which she perceives them.
River has cerebral palsy, a group of disorders which affect the ability to move and to maintain balance and posture. For River, this means that he uses a wheelchair and depends on others for assistance with most daily activities. He uses an eye-gaze-controlled computer to speak, and also to do things like listen to music, send emails, and take goofy selfies with his friends!
When Sami was eight years old, she learned she has celiac disease. Since gluten is a ubiquitous protein found in wheat, barley and rye, it can be tricky to steer clear of it. Cross-contamination is another serious related issue. Sami began to learn about food and ingredients early.
Henryk has type 1 diabetes, an autoimmune disorder in which the pancreas produces little or no insulin. Insulin helps the body to control the level of blood sugar. High blood sugar can lead to severe complications. Henryk says the biggest challenge is not being able to eat what he wants, the way his friends do. Eating in restaurants is particularly challenging.
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