I was born with CPKU as well as my twin sister. We will die with CPKU too unfortunately. It isn’t anything you have a chance of outgrowing or recovering from. It is the most difficult and most expensive diet to have or come across. Formula is so essential to everyday health especially in the younger years when you are a child and the brain is still growing. It helps you stay focused, healthy, and most importantly full when you’re hungry. Medical food(aka a 1lb bag of pasta for PKU patients goes for $12.00 plus ridiculous shipping costs). We certainly don’t have the luxury of going to a super market and getting a 1lb bag of pasta for $2 or .88 cents when it’s on sale!).
I really hope it becomes mandatory that all insurances provide full formula and medical food cost for PKU patients because we all can benefit from it especially women because Maternal PKU is supposed to be an enjoyable experience and a healthy one for you and your unborn child. Without any access to the formula and food you risk doing damage to your unborn child.