Today is the National PKU awareness day!
Not sure what PKU is? Well, you’re not alone. It’s actually pretty rare. We had no idea what it was until Zach was born. And, then Madie was born and also had PKU and so obviously our family is passionate about PKU awareness day. This link has some great info. But, in a nutshell…
People with PKU can’t eat protein. Yeah, wrap your mind around that. No meat. No eggs, dairy, chocolate, pasta, bread, ice cream. And yes, even fruit and veggies have protein. Now, they can have varying amounts of foods with a lower protein amount depending on what severity of PKU they have. But, our kids will never eat meat or drink regular milk. They have what’s called ‘Classic PKU’.
What that means is that our kids will always be a on a very regulated and special diet. They have blood tests done to check their phenylalanine levels. And then everything they eat is weighed and measured. They also need to drink a medical formula every day that helps keep them healthy.
The wonderful thing about having PKU in this generation is that our kids will live a healthy life. But that’s not true of people with PKU who born in a different time. Before there was standardized testing, people with PKU would end up living in a home and need a ton of care. That’s because their bodies can’t process the acid in protein and that acid attacks the central nervous system. But, because a couple of doctors fought for 50 years to get the test approved, my kids will live a pretty normal life.
Now, it’s not all cherries and roses. They have to deal with the constant feeling of being left out. Since everything revolves around food in our lives, our kids typically can’t eat 95% of what everyone else can. So, its been a journey for them to figure that out.
And, a few medically based food companies do sell low protein food! Which is awesome! But, it’s terribly expensive and yup, insurance companies do not like to reimburse for it! So, a box of macaroni and cheese is $9.50! A loaf of bread is $13 and then you have to pay for cold shipping! Yup, it stinks!
We have to be ridiculously diligent about their diets because even a few days of higher levels may mean a loss of points to their IQ, problems with focus and headaches and some other fun side affects.
We’re praying for a cure.
We hope you would consider praying for a cure. We’re praying for financial assistance for PKU families to help with the cost of food. We pray daily for Zach and Madie’s health. We pray daily for the PKU community.
And, we’re praying for Winona Mae! She also has PKU. We have started her adoption process. She’s a 17 month old from China. You can read about HERE. For her adoption, we’ve been assured that she’s been on diet and so that’s a huge relief that she’s getting the care that she needs to be healthy. But, we have a long way to go and we’re actually raising funds to help us bring her home quicker.
If you would like to help, you can head here.
Thanks for reading! Thanks for praying for a cure.