...Tomorrow is National PKU Awareness Day. I know it doesn't affect many of you, but about 3 years ago our family was taken by surprise when we learned our little boy had p
ku. There hasn't been a day since that I haven't thought about this rare genetic disorder, including the day we received the phone call confirming his sister's diagnosis of PKU as well.
You never think it is going to be you or your family...but sometimes it is. God calls YOU to carry the unexpected and in turn change the world. I'm so thankful for the family and friends who have surrounded us and lifted up our family...even when we didn't even know how we needed help.
There is a steep learning curve that goes with learning an entirely different way to calculate and feed your children. And an even bigger "pill to swallow" is learning that insurance doesn't always help pay for the food and formula that is essential to keep your baby from becoming mentally retarded. (Oddly enough, most insurance companies would provide a much more expensive coverage if the diet is not managed and the unthinkable mental retardation happens)
All in all, this journey was not the path I had expected, but it certainly was the road I needed to be on! Tomorrow we celebrate PKU...tell someone that you know someone with PKU - build awareness and support our efforts to secure funding for the LIFE-SAVING PKU food and formula! Zay and Ellie thank you! :)
You never think it is going to be you or your family...but sometimes it is. God calls YOU to carry the unexpected and in turn change the world. I'm so thankful for the family and friends who have surrounded us and lifted up our family...even when we didn't even know how we needed help.
There is a steep learning curve that goes with learning an entirely different way to calculate and feed your children. And an even bigger "pill to swallow" is learning that insurance doesn't always help pay for the food and formula that is essential to keep your baby from becoming mentally retarded. (Oddly enough, most insurance companies would provide a much more expensive coverage if the diet is not managed and the unthinkable mental retardation happens)
All in all, this journey was not the path I had expected, but it certainly was the road I needed to be on! Tomorrow we celebrate PKU...tell someone that you know someone with PKU - build awareness and support our efforts to secure funding for the LIFE-SAVING PKU food and formula! Zay and Ellie thank you! :)
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