Bailey

Bailey is 28 years old. He is an aspiring airline pilot who was diagnosed with phenylketonuria (PKU) at birth.

PKU is an inherited metabolic disorder caused by a deficiency of the enzyme phenylalanine hydroxylase (PAH). This enzyme is required for the breakdown of phenylalanine (Phe), an amino acid found in all protein-containing foods.

“I just put it in the easiest terms and I tell people I’m allergic to protein.”

Signs and symptoms of high Phe levels include a variety of neurological and neuropsychological complications.

“Sometimes it will be really hard for me to focus. Kind of like the lights are on and nobody’s home.”

Growing up, Bailey had to be conscious of his diet, making constant concessions and adjustments. He had to bring his own specially-prepared food with him to school and other events. In an effort to keep his PKU symptoms in check, he also drank a thick formula every morning that often caused him to feel sick afterwards. However, he has become accustomed to preparing his meals and says we wouldn’t want to risk his health and brain by not managing his diet and following his treatment plan.

Bailey enjoys attending rare disease community events, but at first he felt like he didn’t belong. There weren’t any obvious physical signs of his PKU and he could live a normal life with the right care and management. However, Bailey soon began to enjoy sharing his insights with other PKU patients, especially families with younger or newly diagnosed patients.

Bailey continues to live his daily life without allowing PKU to be an obstacle for him or his goals. He is almost done with his first pilot’s license and has logged 200 hours.

“Let’s see what the next 10 years brings.”

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