It’s PKU Awareness Day

Our lives changed drastically on June 11, 2004. I still remember it like it was yesterday.

I was sitting in my office and a phone number I didn’t recognize called me. That same number had called me earlier a few times, but I was in meetings and I didn’t recognize it, so I didn’t answer. I finally answered and a nurse started to explain that my wife and I needed to bring our 2 day old baby boy to Ann Arbor to the U of M hospital immediately.

I was super confused. Zach wasn’t even born there. She began to tell me that my son had tested positive for a rare genetic disorder called PKU and there was a clinic at U of M for families with PKU.

I had never heard of PKU. Of course instead of listening to her, I immediately started to google PKU and as I started to read, my stomach began to drop. That’s what happens when you don’t listen to the professional on the other end of the phone and you frantically start googling things.

I hung up and agreed that we would bring in Zach immediately. I sat back in my chair and literally felt all the air go out of my lungs.

I called my wife and started to explain to her what was going on and at the exact moment I called she was feeding him a bottle and had to stop immediately because the bottle was filled with way too much PHE. A term that has now resided in my family for 10 years and dictates the diets of both Zach and Madie.

The waiting room was packed that day but all I remember is being rushed back to talk to a team of people that were waiting for us. They began to explain that Zach had PKU and then they started to explain this new life that we were about to start.

Now, Zach was our third. Bekah and Bobby paved the way and by number 3 you pretty much have some things figured out. Everything was different!

For starters, we were told that everything Zach ate had to be weighed, measured and tracked. That’s when a gram scale became king in our house. Then we found out that Zach would be on a medical formula for life. They showed us how to measure and track his formula and eating. They told us about the blood tests.

Then the hammer dropped. They told us he would never be able to eat foods high in protein. Foods like…chicken, steak, burger, ice cream, pasta, bread, milk, cheese, rice, beans. For someone who loves food, my head was spinning.

Finally they told us that he would be on this special diet for life. There wasn’t a cure, but by staying on diet, he would be healthy.Yes, such a HUGE blessing!

But, if he went off diet, the acid in the protein would attack his central nervous system. And when that happens, nothing good comes from it.

I feel like Tracie and I took turns holding him and each other that night and we just wouldn’t let him go.

Fast forward to 2014. We have two amazing kids with PKU. Honestly, I would do anything for them not to have PKU. Not to have to worry about their blood levels and their PHE and the amazingly expensive food and the fact that insurance companies aren’t mandated to reimburse families for the crazy high price of their food. IMG_1771

But, they are both doing great! We’ve had some struggles. The kids are amazing and it’s just a part of our lives now.

I do pray everyday for a cure. I pray everyday that God would use this to build their identity. I pray everyday for help with the ridiculous costs of their food.

Today is national PKU awareness day and I wanted you to know about our journey and story. IMG_1766

 

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