My son Alex was born with PKU. He is currently 9 months old and requires 6 ounces of his PKU formula. As he grows this is most likely to increase as we are still trying to figure out his tolerance of protein. Our insurance won’t cover his formula because it isn’t his sole source of food, and only until he is age 5. PKU is lifelong, so his need for the formula as well as medical coverage will be lifelong. Having proper medical coverage for his formula would mean the world to our family, it would levitate this financial stress that hangs over our head that we deal with daily. It consumes our day to day life. My husband’s employer provided health insurance will only cover my son’s PKU formula if it is his only source of food, and only until he is age 5.
- Mayes, Age 4