Our daughter, Charlotte, was born with PKU or Phenylketonuria which is a rare inherited (genetic) metabolic disorder, in which the liver cells cannot convert PHE (phenylalanine) to TYR (tyrosine). In other words, she cannot process proteins and is treated only with a restricted diet that we have to constantly monitor. At the moment, Charlotte is allowed only 7 grams of protein a day. The results of not living a strict no-phe diet would mean irreversible brain damage. (An utterly devastating and overwhelming thought at times for us her parents!) People always ask and the answer is that this is a life-long condition that she will not ‘grow out of’.
We were told of Charlotte’s condition when she was only 6 days old following the routine heel-prick test at the hospital when she was 3 days old. At the time of the test, the midwives said not to worry about it and that if you received a phone call it would only be to retest. Not so with us. Our perfect newborn had to undergo additional testing to confirm the initial results.
While we were in a state of shock and grief in the early days (and thinking we were in the world of rare genetics and diseases), we quickly discovered that Charlotte’s story is not that uncommon and that a healthy, normal lifestyle is still possible. In fact, we do! We do live a very exciting, healthy and positive life with our (now) toddler.
As we are growing up together with this disease, I find there is so much room for CREATIVITY! When one is limited, one finds different ways to progress and create.
Our holidays are no longer focused solely on what’s on the table, yes…food is always an important factor, but also what crafts did we make, what games did we make, and who did we meet?
Our weekends are filled with activities, exercise and visits to farmers markets and shops.
We cook together as a family and food is always visible.
We do not order take away and focus on made-from-scratch recipes. While it is not possible to cook big meals everyday, we do large cooks on the weekend to freeze for lunches during the week. These meals are then divided into serving size and the protein counted.
We use lots of tricks when travelling; whether it be for the afternoon or an overseas trip. Everything is planned.
I was amazed when I started speaking with other PKU families about their struggles that the difficulties did not stem from protein counting (that becomes routine). Instead it was,
- How to make the PKU child not feel different than the non-PKU members of the family or friend circle; especially at special events or holidays?
- How to make a single family meal instead of multiple and separate meals?
During my own PKU searching of other blogs and websites, I was upset with the focus on making PKU food look and taste like ‘normal’ food. I even found imitation peanut butter! “Low in protein, but tastes the same!” What?! All the added sugars and artificial ingredients only fuelled my passion to find healthy alternatives that the whole family could eat.
And so I began amending recipes I found on my favourite food sites or books and calculating protein contents. This proved to be very time consuming and still is. All this work had to be written down.
After discussing my normal routine (of researching food and amending it to work with our family) my Naturopath, friends whom I admire and other PKU families, I decided to share my work with a larger community. My goal one day is to start e-books, with the first step being this blog.
So I hope you get something out of this blog or pass it on to someone who you think would.
Lots of love,
Kristi & Charlotte