My son is currently ten years old. When he was first born, his father’s health insurance through work wouldn’t cover this low protein foods. Thankfully, the formula only was covered through a program. I met a young family of a PKU baby a few months later from New Jersey who was thousands of dollars in debt over not being able to afford formula! I was heartbroken and thought “There, before the Grace of God Go I…”
Over the years and divorce later, my son qualified for medical coverage then was compromised due to my income status, then re-instated. In the last couple of years, I was denied medicaid but pleaded for my son’s coverage – medical nutrition through food and formula versus over $250k for his care due to illnesses from thousands of dollars in debt and not affording the medical nutrition on my own for our consideration.
I personally have the marketplace for just me. My son Declan, has qualified, at this time, for the Delaware Healthy Children Option I believe as a part of medicaid. I contribute $25/month. It is such a great Blessing to have coverage NOW. It is unnerving to know if may not last… I pray every time we are “waiting for authorizations.”