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Patty V. | Missouri | Patient Age: 20 | Disorder: PKU

We are blessed my son is doing fantastic with his PKU. Not all people do well managing it. Jack is a 20 year old college student majoring in aviation/commercial pilot and a minor in business. His levels have always been great and he loves his formula.

Without that formula, my son would have never been able to thrive like he has up to this point. He needs that formula to continue thriving. He needs it EVERYDAY! This isn’t an optional dietary restriction- this is his life just a like an infant who needs formula.

And these formulas taste bad! Really bad- unless you grew up on them. It’s not easy to switch brands, and there aren’t many brands. Since our insurance doesn’t cover his medical formula or food, we spend $500 on those medically required items per month. Another formula we could use as a substitute that he does like would cost us $1500 a month. Our nutritionists at Childrens Mercy in Kansas City found a sub that will be $650 a month. I’m getting ready to order it. I’m hoping we can do a 50/50 mix of it with his remaining phenex to last a couple more months.

Although the cost is important, the real point and my concern is my sons ability to continue living the life he has and will continue to thrive like any other college student. His dad and I have worked hard to make sure he had the best chance at a normal life, and we won’t stop now.