My story is a sad one. I am a parent of a PKU individual. My son was born June 17, 1985, diagnosed with PKU at 3 weeks of age. He was immediately started on a PKU formula and progressed to a diet at the appropriate ages. He was doing great, at that time I lived in Louisiana and the state provided the formula for him but not the food. We moved to Texas in 1992 and unfortunately Texas did not cover formula and I was spending $350.00 on formula alone, plus trying to find food products which were always expensive. It was tough but we did it. Jordan did well, he was staying on diet with a few spikes when he would sneak food. I could always tell when his levels were high, he would become emotional and have erratic mood swings.
Fast-forward to high school and adulthood, Jordan got off diet due to not being able to afford formula or food, and could not afford the insurance that would possibly help him cover these cost. He went off diet. His moods were very hard to deal with, he was either very quiet and manipulative or upbeat, we would constantly walk around on tiptoes because he was so erratic we never knew when he would explode. He would try to get back on diet by getting in touch with the dietitians he had worked with, but was never able to stay on the diet for long periods of time due to not having the financial means. He became mentally unstable.
Today, I do not know where my son is. I saw him last about 3 years ago. He has cut off all communication with his family, he had become paranoid. I wanted to tell you this story to help you understand how important it is for these individuals to stay on diet. My son was so full of potential. He had tested out at college levels in the 9th grade. He was smart, funny, and sweet. He had so much ahead of him, he had so much to offer. I do feel the inability of him not being able to stay on diet mostly due to financial means has caused his brain to deteriorate. It is so painful not to know where he is, it is painful to know that he is not the person he was meant to be. He was not able to hold a job for long due to his emotional instability and I am sure it has not changed today. If we cannot give these individuals a way to be able to care for themselves, it will backfire on society. The food is expensive, the formula is expensive. Would we rather pay for a person to keep themselves healthy and productive or pay for them to be homeless, lost, or in prison due to the consequences of not being able to sustain the diet? While there are some diagnosis that show immediate need such as a diabetic going into a diabetic coma, rushed to the hospital where they immediately receive the medicine they need to get back on track, PKU deserves the same immediate treatment. Symptoms of PKU damage is slow, it doesn’t cause an emergency life and death situation until the damage is already done and unfortunately is irreversible.
I think of my son everyday, I wonder where he is, I worry that he is not safe. I worry if he is even eating. I check google frequently to see if his name pops up in case he was found hurt or deceased. My heart is broken. I don’t think, my son, as a child, ever wanted his life to be this way. Please, we need to ensure that every individual has the means to obtain formula, food, and healthcare in order to be healthy, regardless of financial capability and being insured or uninsured. This is my story, it is a sad story. Please help families and individuals affected by PKU not have to endure this story.

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.