Today is National PKU Awareness Day. I embrace anything that provides an opportunity to educate more people about PKU, especially because it is so rare. Most of the people in my life and others I come in contact with have NO idea what PKU is or have even heard of it. I had only read about it in a book while I was pregnant. I never dreamed it would become a part of my every day life. I really want people out there to be able to learn more about my boy Carson's experience and know what kind of restrictive diet he has to be on and just to be a little more sensitive and aware. I always try to put myself in other people's shoes and I just ask the same courtesy of those around me. There are a select few people out there who do make things more difficult, not knowingly, but they just don't think about others. I also think it is great to raise this awareness up to our insurance companies and the government. In some states there is a good bit of assistance, while others are lacking. Here in Alabama, my husband and I both work, so we do not qualify for any government assistance due to our income. My insurance covers Carson's formula, but we have to pay 30%. It is still very expensive. We get ZERO assistance on his special foods. I have to pay all of that myself (except when we are so blessed to share with a friend!). This is also very expensive. We are managing fine now, but what about the future? How are we supposed to save for our own retirement? for our children's future? These are difficult times and difficult questions for everyone, even those who do not have to consider special medical expenses.
If you are one of our loved ones, family or friend, or anyone who just wants to know more info about PKU, please take a look through my blog archives and read about our experience. I am SO swamped with work right now that I do not have time to write more, I just wanted to raise some awareness for my boy. And also check out my friends, the Austerman's, who have a blog listed on my Favorite Blogs list. She also posted about PKU Awareness Day. If you know of someone with PKU, share their experience today! Tell them you are thinking about them and their struggles. And feel free to write your representatives and senators! Have a blessed day!
