So my name’s Jace I’ve had PKU for almost 27 years now. My brother and I are the second set of twins in the United States to have it. My parents, sister and grandmother did an awesome job keeping us on track, and my grandma cooked for us once a month so we had enough food for school and at home for that month.
Once I got into high school and was about 16 I stopped caring about it. I wasn’t bad with it like eating things I shouldn’t, until my grandma died in 2010 then without her cooking I started eating more and more I shouldn’t. Eventually not maintaining at all, my wife and I have made attempts to get me back on track but I just couldn’t cook like her and never stuck with it my levels were super high but by that point it was normal to me.
I have now started and owned a company detailing and polishing semis I’ve owned it for two years. I started it and ran it off diet but trust me it was hard to push through and stay focused but now that the company is running well I am turning my focus to getting healthy and being on diet. I have classic PKU by the way, so I’ve been eating what I should and have been drinking my formula for 10 days now and feel good. It was a little rough coming down but I feel good over all now. The hard part is keeping it down with my busy life style. If anyone has any good recipes I’m all ears one thing I’d love is good bread and pizza dough recipes I’ve cooked the whole list my grandma use to make and stocked my fridge but I love variety.
Now for the new parents out there all I can say is keep there levels good when they are young and they will be OK. They may stray for a bit as I did but they will come back to wanting to be healthy I’ve got two kids and a wife now neither of my kids have PKU and they are very healthy. My wife is still learning what I have but then again so am I all in all I don’t see it as a disease but a lifestyle. I was born to eat healthy I’m no different then anyone else. I live a very normal life I just get to eat healthy. Even off diet I ate healthy compared to a lot of people in the world and I have no reason to complain. Anyways after my whole story here I’m looking for support and recipes to keep me on track because I don’t plan on giving up this time