Jonathan (4) and Julia (5)
We have 2 kids with PKU, so having coverage for medical nutrition would mean the world to us. My husband switched jobs for better medical coverage and we lived for 18 months with full medical food coverage. It was like a dream. We could order our kids’ food without restriction, they were able to try new foods, and their levels maintained in a healthy range because they were able to receive the food, nutrients, and calories necessary for proper growth and development. Then, my husband was laid off and our world came crashing down. Considering we pay $88 out of pocket for every blood draw for both kids every other week (every week when they’re sick or have high levels), the added monthly expense for food became overwhelming. My husband is looking for a job based on their benefits, so we can enjoy our time together and not constantly stress about how we are going to get food to feed our kids. This is so frightening to us, as our kids are only 4 and 5 years old and we have a whole life time ahead of us. It is hard to enjoy these years because all I can think about is how their diet may literally eat us out of house and home when they become teenagers. My insurance has the medical codes to cover the food, but does not carry gap exception. Therefore I have zero coverage for food because everything is considered out of network since I have to order their food from out of state.