Oliver, 10 months

My son was a week old when we got the news that he has PKU. I had no clue what this was and didn’t realize just how serious it was until it was explained to me as do most people. For months I was in denial. My son can’t eat protein?…How is that possible? How can he live? He’s never going to enjoy an ice cream cone on a hot day at the park, or order a burger at a restaurant. I was confused and angry. But with the help of medical foods life has been easier. There are options for him, but the cost is high. I now have 2 grocery bills every month. I can’t cut corners when money is tight and sometimes they are very tight. Our Insurance does not cover any medical foods, nor does the state. I bought two boxes of low protein noodles, bread crumbs, and Eggz (an egg alternative) and it was $60. Medical food coverage would be life changing for us and so many who struggle with this extremely rare metabolic disorder.

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