Lauren’s Story

Lauren is 13 and lives in Shreveport, LA. Her parents did not know she had PKU until 19 days after birth. When she was diagnosed, her family was “freaked out” and “scared”; her pediatrician had no other PKU babies under his care and immediately referred the family to a PKU clinic at Tulane. There, the clinic staff had a PKU workshop, explained the disease, and provided formula and guidelines for diet. According to Lauren’s family, the dietitian at the clinic “put the fear of God” into the family about the importance of sticking to diet. As a small child, Lauren had blood tests every week to ensure blood Phe levels were within normal/healthy range.