Tia, a high school senior, loves reading and writing about climate change and politics. She also has PKU, a rare, inherited metabolic disorder. Eating too much protein could cause permanent brain damage.
Children’s National Hospital has helped safeguard Tia’s brain since she was 2. She and her family spend hours every day measuring, monitoring and logging details about her diet, which is limited to fruits such as apples, medically-engineered foods and specially-formulated PKU formula.
Weekly blood tests allow her care team at our Rare Disease Institute to measure the protein markers in her blood. Tia recently became Children’s National’s 9th patient to start a new PKU drug approved by the U.S. Food and Drug Administration to help patients expand their diets.
Tia’s family also has fought hard over the last 17 years to raise money to fund research about PKU treatments. In early 2020, her mother, Alison cross-country skied across Norway on a fundraising mission.
“Tia has grown up at Children’s National,” says Alison. “She also writes for her high school newspaper, participates in the model U.N. and loves history. While many PKU patients struggle to focus, she excels academically because her team is so careful — protecting her brain every day in a very loving way.”
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