Kansas

Hi, I’m Jack and I’m 23 years old, still on my parent’s insurance. This is the first year my formula has been covered through my parent’s insurance, but we haven’t received a bill yet, so we’ll see how it works

My daughter has a milder form of PKU and therefore does not need as much formula to live a healthy life. However, as she gets older her body will need more natural protein, at which point she will need more

Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end) Where it all began: I located a new campaign for awareness that NORD started, The 7000 Mile Rare Movement. I

Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the insurance company acted like it wasn’t necessary. They cover the Kuvan medication which gives him more protein

We reside in Kansas. Our son Jackson was born June 12, 2012, 5 days later the State of Kansas called with positive results for PKU from Jackson’s newborn screening test. I initially worked company that covered medical nutrition until Jackson

When our firstborn was just 7 days old, we received a call to rush him to the hospital. He had tested positive for PKU. We, including extended family, had never heard of PKU. The beginning of our journey was filled