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 Hafsa

I see PKU almost like a blessing in disguise….

it taught me right from wrong,

taught me how to discipline myself,

taught me self-control……… tell you honestly i don't even like it when people call it a 'disease' i prefer the word 'condition' as diseases actually bring a dis-ease to your life, whereas PKU has helped me to a certain extent….so how can that be a disease?

i am 22 now, i when off-diet when i was 18, and to tell you honestly all my life i looked forward to that day when 'i could eat anything'…..i used to say to my dad 'we'll have a big party, have chicken, chips, pizza etc' but when the day came and i went to hospital and decided it's best for me to come off-diet….i was actually quite upset that day…'s really hard to explain but it was like a part of me was being taken away and i was just enetering into a different world. but i felt it was the right thing to do and i'm very glad i did… life hasn't spiralled out of control even when i was on the diet and now that i'm off the diet. i managed to do my a-levels, go uni and now hav a job and should be planning to settle down soon.

so all i can say is that i know it must be a terrible thing to hear your baby has some sort of 'condition' but believe you me i can almost guarantee you that when he becomes older he will not blame you, things like this are out of an persons control, you're either a carrier or not. my parents always told me when they found out i had PKU it was absolutely devastating for them, i'm the only one who has PKU in my family, however i have an older cousin who has it too so my parents were aware of what is was.

one last thing i would like to add is that i never saw PKU as something being wrong with me, i just saw it as some special diet, which i believe it is. just like someone who has diabetes, there's nothing exactly wrong with them. so having PKU, in a very weird way, made me feel unique and different. being with my friends i would think i look exactly normal like them but i have something about me that makes me different to them and something you can't even tell by looking at the person. believe me, it must be hard for you, but eventually your baby will grow up and he'll be so used to having PKU, it'll be a part of him, yeh he will desire to have other foods probably, but when you've had the same diet since you were a baby to an adult you become so used to it….don't get me wrong he may have some ups and downs with it during high school or college but everyone has theirs ups and downs about something…..

hope i've helped :)

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