Wednesday, May 25, 2016

National PKU Month

     May is PKU awareness month and I've been wanting to write an entry about this for a couple of weeks now.  The problem is I just don't know what to write.  Yeah, I've got two kids with PKU and I don't know what to say.  Sounds pretty silly right?
     I mean, I obviously pay attention to PKU.  I have to weigh out their foods each day and prepare special meals.  But that's about it.  I don't research PKU and know what's the latest in treatments.  I don't participate in clinical trials.  I don't do public speaking  about PKU.  We currently just live with it.
     My dad asks me a lot about what's going on with PKU and research.  And I don't have a great answer.  I know that many people are using Kuvan and are having some success.  I know that the local trials of PegPal have been stopped.  But other than that, I know nothing else!  I do feel really guilty about my lack of understanding or maybe desire to research PKU.

     Maybe I don't pay close attention to it because I don't have to.  My kids have always had wonderful phe levels.  They've always taken their formula.  They love low protein foods.  They don't try to sneak other foods.  And our 3 year old knows how to advocate for herself.  I'm lucky and maybe that's part of the problem.
     I want to make better decisions for my children and that means that I need to become more of aware of what's happening in the PKU world.  I need to become more involved.  I need to be more than just a mother of PKU children, I need to be knowledgeable.
     I've starting taking some steps in this direction.  I recently started a meatless meal link up, hoping to find more PKU/low protein recipes.  The problem, only 1 person with PKU has added a recipe!  I have 3 cookbooks full of recipes, but I want to hear from others who are actually in the trenches.  I've also started a Northern Illinois PKU group and we're going to have a get together in a couple of weeks.  My fear is that me and the kids will be the only ones who show.
     I'm not loud.  I'm not an extrovert.  I'm not aggressive.  I'm just a simple, passive mother who wants to show her children (all 4 of them) that PKU is just something extra.  That there are many successful adults with PKU and that if on diet, anyone can be successful.  I'm hoping that by taking my small steps on the PKU path, that I may one day be able to look back and know that I did what I could for all of my children.
     I don't want to look back and wish that I'd been a better advocate for my children's special needs.  With that being said, I will do my best to learn more about PKU, the current research, potential treatments, etc and share them with my readers.  By being better educated myself, I am spreading PKU awareness this month and always.

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