Denver, Age 12

Having coverage for the food and formula would be absolutely amazing for our family. I would be able to make a career move making more money that would benefit us as I am a single mother. I have never been a person that wants to live on state and/or federal aid of any kind even when I had a son at 17 I didn’t utilize it. I like making an honest wage and knowing that I am supporting my sons without assistance but for 12 years now I have had to have the assistance. I know the first thing I was told by the genetic counselor when my son was diagnosed was to quit my job because I wouldn’t be able to afford the high cost of the low protein food. That is not an option for me as I have way too much pride to take that type of route.

My son’s low-protein food is currently covered by the Division of Specialized Care for Children as long as we stay under a specific income level. If we go over then all expenses rest with us. The food expense is extravagant therefore I must stay under this income limit. I have had the opportunity to have a higher income but it would be eaten up by the cost of the low-protein food. Currently, Illinois does cover the cost of the medicated formula.

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