Community Discussion Forum Parent support My son has PKU, how do I deal with this? Reply To: My son has PKU, how do I deal with this?

Avatar of Becky


I am 20 years old and I have PKU!! I can't believe what you read about risking having more children! I am completely flabber ghasted!! Having PKU really isn't the end of the world! As others have said, there is lots of specially made low protein foods available and there are lots of fruits and veggies that are allowed freely which you would feed a little 1 to keep them healthy anyway!

I have NEVER blamed my parents for my having PKU EVER!! The thought has never even crossed my mind! And you shouldn't think for ONE minute that your lil man will ever blame you!

You shouldn't let Riley having PKU stop you from having more children. And your husband certainly shouldn't feel it is his fault because at the end of the day it is one of those things and your son will grow up more or less the same as everybody else. And most of all NO PKU REALLY IS NOT THAT BAD!!!

As I said I am 20 years old. I am happy and healthy and couldn't wish for a better Mum! I love her very much and as I said, would never blame her for my having PKU!

Don't worry you haven't offended anyone! And I hope I haven't made you feel worse because I just want you to feel better about the whole situation!

When I was growing up I always felt special to be different and as long as Riley is loved as he obviously unconditionally is, he will feel special too, and you will have nothing to worry about!

When he is 20, you will wonder what you were so worried about! I know my Mum and Dad were VERY worried when I was diagnosed. Now they wonder what the worry all was in aid of!

Hope my comments help!! I would never want to make you feel worse. I hope I have reassured you a little more!


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