“I wanted to do something physical to raise awareness of PKU,” Reynolds said. When her Phe levels were too high, she felt like she was in a fog. The drug helps to lower Phe levels in the blood, but it can have side effects — and it’s expensive, although treatments are often covered by insurance. In December, doctors at Children’s National Hospital called with exciting news: Her Phe levels were at zero — something unheard of for Tia. On the last day of her trip — Feb. 29, which coincides with Rare Disease Day — Reynolds will be met by some of her family and friends in Norway.

Source: Washington Post February 12, 2020 12:00 UTC