Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, learning to care for someone with PKU has been challenging. My husband works out of town, prior to Anthony we had planned for him to take a job at home, however with the expensive medical foods and formulas, our plans changed. Until Anthony was diagnosed none of us had ever heard of PKU, I now make it a point to spread the word as much as I can. Everyone always ask, “Will he grow out of it?”, I then have to explain its permanent. If we had coverage for formula and foods, we would definitely not feel so overwhelmed with the cost of PKU. If it wasn’t for the out of pocket cost of raising Anthony, my husband could be at home watching our grandson grow up as well as our two sons that still live at home.
Patients & Providers for Medical Nutrition Equity
Working to secure access to medically-necessary nutrition for all.