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.