It was February of 2006 when I met the man who would become my husband. I met him through an internet dating site and knew from his introduction page that he had a condition called PKU. I did some research and thought I understood it enough. ( How wrong that assumption ended up being, but that is for later.) All I could tell was that I getting to know a wonderful man who had an amazing mind, a big heart, was a whiz with computers, loved sci-fi but weighed only 98 pounds. I fell quickly and hard for him (and he for me) and decided early on that no matter what his condition was, that I was going to love him and support him. 

I was disheartened to find that there is very little research and information on PKU adults. No one seemed to know (or care) what happens when the affected children turn 18. It was as if they were on their own. I wanted to know what could be in the future. Were they prone to certain conditions like Parkinsons? Was Owen's low weight normal? I could find nothing and did not know what to think. I put it aside though, and started working on my own for answers.

I learned quickly that the PKU diet was (in the most basic terms) a soy-free-low-pro-vegan way of eating. Of course it is much more than that, but that is what I came to during the first few months. We were both living at home and while I did quite a bit of the cooking for my parents, Owen was helpless in the kitchen. I discovered that his formula smelled awful and the only kitchen equipment he could use other than the blender to mix it, was a microwave. I also learned that he did not have any of the specialty foods (other than some pasta), and was eating just the sides that his mother cooked.  This was disturbing to me.

When it became apparent that our relationship was going to last, I switched school districts and was hired to teach closer to where he lived. That  meant moving back out on my own and cooking full time again. With being closer to Owen, I wanted to get some weight back on him (the Itialian in me).I borrowed his mothers PKU cookbook (ancient edition) and sat down for a cram session. I quickly discovered that half the items were specialty foods and the other half were nearly impossible to find. On my budget, that made things difficult. But, being that I love to cook, I found ways around it (more on that later) and soon had a workable menu for when he came to visit.

It was not until we were engaged and I attended his annual visit to UVA Children's that I found out about the cookbook Apples To Zucchini and we got that and an updated food list. Wow! The difference that book made was astonishing.

Fast forward....Owen and I have been married over a year now. There have been many ups and downs. There is short term memory loss and we are working though it. His weight is finally over 100, but not by much, and we are working through it. He eats better now, but has many food aversions and we are working through it. We have more support through Ryan's PKU Foundation and friends we have made through them. These next posts will be more details on how we are working through it all and hopefully what you can do to help your loved one.