Community Discussion Forum New to I've never even heard of PKU… Reply To: I've never even heard of PKU…

Avatar of Janice

Hey just wanted to let you know things will get better, 6 years ago I was sitting in your spot, I was scared  and didnt know what to do.  Now I have a beautiful talented healthy little girl Cyra she is 6 and 1/2 ( that 1/2 is very important to her) in the picture on here she had  just got home from her first ballet recital.  As you can see I also have two boys my 4 year old Chase is a happy and healthy active boy who does not have pku and my spunky 2 year old Kenny is always into mischief and he does have pku.  Eventually pku will be a part of your life but not the only part. 

Brea did a good job of explaining the levels, I did want to add that with each child it is different how much phe they can handle my 2 year old gets more then my 6 year old.  So trust your dietians they will help you find out how much your daughter can have.  Please try to make a point to enjoy your daughter while she is a baby this time passes so quickly and she will be fine.  Any other questions feel free to ask.  And when your wife is ready get her on here too.

we will keep you in our prayers, also I know she  is young but if you can go to any pku outing in your area it helps to meet other families  


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