Clark, Age 3

Clark is 3 years old, and has a twin brother. He is as rambunctious and full of energy as any 3 year old boy could be. He’s the pickier eater of the two, but he’s at the age where he doesn’t understand why he can’t eat what his brother eats everyday. It’s heartbreaking to constantly tell him no when he doesn’t understand. Hopefully this be a benefit to him when he’s older.

He is the friendliest person you’ll ever meet, and talks to everyone he sees. His twin, Anthony, is much shyer so they compliment each other really well. He is a quick learner and loves books and cars. We can’t imagine what life would be like for him if he wasn’t able to get treatments – his mind, his behavior and his physical abilities would be permanently damaged.

He currently gets about 6.5 grams of protein per day. He LOVES low protein pasta and eats it everyday, sometimes twice. He’ll yell “noodles noodles” whenever he’s really hungry. A 500 gram box of pasta is roughly $15 and he can go through 2 a week.

Our greatest wish is for a cure for PKU and we are grateful for the current research going into further treatments.

Our current insurance covers the cost of metabolic formula but not medical food. We will have a different insurance provider starting in January, and they will provide no coverage.

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.