Rebecca and Stephen

My name is Christy and I am a mother to 2 beautiful kids, both with PKU. My daughter, Rebecca, is 21 on Sunday and my son, Stephen, is 18. My entire world changed on June 14, 1997. That is the day I received the phone call that my daughter had tested positive for PKU. I had no idea what that meant for her or her future. My husband and I were terrified. The long journey to get the proper coverage began on that day. My insurance is self funded. While my insurance had agreed to cover the food and formula for my children, it is a battle every single time I send in a bill. Not to mention I can not find a DME company to provide the necessary formula for my children.

If there was full coverage for formula and food, my kids would be able to order enough food to keep them satisfied and not stress about money or benefits. The worry of being able to pay for medically necessary foods would be taken away. This is necessary!! The passing of this bill would enable my kids to live a more “normal” life without the worry of coverage for their food.

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