PKU - Mollys Story

This story is told by an eight year old who was diagnosed with PKU through Newborn Screening. PKU is a rare metabolic disorder affecting approximately 1 in 20,000 newborns. People with PKU lack an enzyme in the liver that breaks down phenylalanine, an essential amino acid in protein. Without being on a highly restricted diet, this amino acid builds up in the blood and causes severe brain damage. The diet does not involve simply being a vegan. Grains, beans and soy are high in protein and cannot be eaten. Protein, and therefore phenylalanine, is in everything except water, sugar, oil, vinegar and pure starches. Fruits and vegetables are allowed in the PKU diet, but only in measured amounts. As there are no grains permitted, baked goods are made with fragile starches instead.

Molly has been on a low protein diet since she was diagnosed. She is an incredibly bright and articulate eight year old who excells in all subjects in school. While she struggles with the feelings of being left out in social situations due to her special diet, she still manages to see the bright side of things. As her mom, I could not be more proud.

Thank you!

Visit www.babysfirsttest.org/ .