Hi! I am from Ontario. My daughter is in the hosptial in London. We are waiting back on the blood work to see if in fact she has PKU. Her screening came back positive so that is why they did the test. How did you parents deel with all of this at first. We just want to know if she has it or not. Sara
We also deal with the doc’s in London ….i bet it is the same one. At first it wasn’t easy….you think and read about the terrible things! They are wonderful in London….they make sure everything is understood!! PKU as you know isn’t something that goes away….but you can deal with it and learn to live with it. Just remember when your feeling down….there are many other things out there much worse then PKU!!!
My older sister have pku too and if i can give anyone with a child with pku an advice, meeting someone with pku will help them. I do not know how my life would be whitout my sister. Knowing someone having the same difficulties then yours is a relief.
For all parents who have a pku child, thank you. I can't imagine what you are going through and i admire you.
Don't give up, your child will thank you one day for all you have done for him. But until that day you will have to be strong.
I am from Ontario, Canada. Recently my premature son was found to have PKU, he is now 17 days old. It was a struggle to deal with at first to know that worst case senario, my son could not eat very much of our everyday food. Due to lots of research on the topic and helpful posts from people, we have found that it is an obstacle but not impossible. This website is just fantastic, and wonderful. It has eased my mind tremendously to know that there is support and others going through the same stress.