National PKU Day

This past Monday was the first ever National PKU day.526890_4380736631195_539369327_n

It was a VERY big day for my family. Why? Because PKU is a big part of our lives.

Our 8 year old (Zach) and our 4 year old (Madison) both have classic PKU.

What is a PKU Day? 

Here is the official congresstional resolution describing the tremendous work from Senators Johnny Isakson from Georgia and John Kerry from Massachusetts!

What is PKU?

Here are some really simple sheets (here and here) to download that will give you a great foundation for what PKU is and how you can help. And, here are two great videos (here and here) that will help you as well.

More Information on PKU

National PKU Alliance

PKU Advocate Kevin Alexander

2012-10-18 16.29.48

Michigan PKU

Our Story

It was on June 17th, 2004 that our lives changed forever. Zach was born just a few days earlier on June 9th and I remember sitting in my office and getting a random phone call from a person from a clinic at the University of Michigan hospital.

Her call took me by surprise. Zach was born in Royal Oak and I didn’t know what she was talking about. She had been trying to get ahold of us and had tried for a day or two. She was actually getting ready to send law enforcement help to our house to contact us. I don’t remember much about the phone call, but I remember her telling me that my brand new baby boy had a genetic disorder called PKU and my wife and I needed to bring him to the clinic that day.

Well, like most people I immediatly googled PKU and was in shock. I had never heard of it and I began to read stories about it. I called Tracie and tried to explain the phone conversation that had just happened. I do remember calling my dad and telling him and my dad is such a man of wisdom. He is a man of great patience. He is a man after God’s own heart. And that call helped calm my fears and remind me that God is control and has a plan.

We took Zach to the clinic and were ushered back into a room as soon as we got there. A great team started giving us the ‘PKU 101’ talk. It’s hard to even describe the feelings that we had. Kind of like what I imagine it would be like to be by a bomb that goes off near you…everything seems to be out of sync. Kind of like that.

I remember them telling me that my son couldn’t eat meat and I got really sad. I remember telling us about blood tests and weighing food and special formula’s…wow, I wasn’t ready for all that.

Actually, shamefully so, I let my wife handle the details of PKU for years. And, really, I she deals with the bulk of Zach and Madie’s diet.

But, I wouldn’t deal with it emotionally. I wouldn’t think about it. I just wouldn’t process it. I can actually remember sitting with his Kindergarten teacher, principal, school nurse and Tracie before he started school and not being able to talk about it. I let Tracie do all the talking.

And, I actually just cried.

It’s funny, all these years later, I still cry.

Yesterday we went into Zach’s class to tell them more about PKU. It was a blast. Tracie made some of Zach’s favorite food and we gave the kids a chance to try them and they loved it. It really helped Zach….I think. Every time he starts to talk about his PKU lately he starts to tear up. And at one point yesterday, Tracie was explaining to the kids that it meant Zach couldn’t eat things like Meat, or Dairy or Chocolate and this sweetest girl puts her hand on his shoulder and says…I’m sorry Zach. Well he teared up a bit and I’m over in the corner crying like a baby!

I look at Zach and Madie and I’m just in awe that God has given me the privilege of being their dad.

PKU is a part of our lives and I’m glad we have a great support system.

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