Finding Her Voice

Girl with confetti

When Heather noticed that her infant daughter, Emmalyn, consistently cried more than other babies, she knew she needed answers. The family was referred to Bankole Osuntokun, M.D., a gastroenterologist at Cook Children's, to find the cause of Emmalyn's discomfort.

"She cried non-stop," Heather said. "Day and night, she just screamed. Cook Children's put us in touch with Dr. Osuntokun, and he did a scope when she was 5 months old. That's when we got our first diagnosis of eosinophilic esophagitis."

Eosinophilic esophagitis (EoE) causes eosinophil, a type of white blood cell, to build up in the lining of the esophagus. This buildup can inflame or injure the esophageal tissue, and cause extreme discomfort and even malnutrition in children.

"The way we explain it to her peers is that there are eosinophils in your body, and they see things that you eat and attack your esophagus and intestines," Heather said. "Imagine having thousands of blisters lining your esophagus; that's what you feel when you eat."

Throughout her life, Emmalyn's family has tried a number of treatment regimens including special formulas, elimination diets and swallowed steroids to ease her discomfort. Because Emmalyn has experienced EoE most of her life, she felt uncomfortable when she entered remission for the first time.

"When she was a baby, I wished that she could tell me what was wrong so I could fix it," Heather said. "When she could talk, she didn't complain. The only time she complained was when she went into remission. It took four or five years for her to realize that EoE isn't normal; that isn't how your body is supposed to feel."

Emmalyn's diagnoses helped her find the confidence to communicate her needs. At 10 years old, she can now speak for herself. Throughout her time at Cook Children's, Emmalyn has learned to communicate with her caregivers about her fears and concerns.

"Emmalyn is learning that she has her own voice," Heather said. "[At her most recent procedure], the Child Life specialists came in, and I told them that she was very adamant that she did not want to do the procedure. They helped her realize that she has a voice, and she has power. She voiced her concerns, and they helped us figure out what she needed to do and things that she had the power to decide, like different ways to go to sleep and wake up, and whether or not to get the 'giggle juice'."

Emmalyn continues to receive treatment to manage her EoE and additional diagnoses of hypoglycemia and seizures. She communicates with her caregivers about her treatments, and asks for things to make her more comfortable.

Aside from the answers and treatment she's found at Cook Children's, Emmalyn has also found the confidence to advocate for herself and her needs. Her journey has helped her find her voice.

Thank you from each family, patient, nurse, physician and staff member whose life you will have touched with your generosity.