Raelene Boyle

My name is Raelene Boyle and I have PKU. I am 42 years old and am the only one in my family who has PKU. I have 2 older sisters and they say when I came into the world things changed dramatically.

They were both tested as newborn screening wasn’t around back then, and it was found neither of them had PKU. (they are 9 and 11 years older than myself.) I was immediately put on a low phe diet (at 3 months old) and thankfully my mum was very strict and listened to all the specialists ignoring everyone’s personal opinions. Even GP’s tried to tell her diet wouldn’t work and I would just be retarded.

As I grew up it was just a part of my lifestyle and I really don’t remember ever not knowing what I could and couldn’t eat. We have seen lots of new products come and go from the supermarket shelves, but some staples have been available throughout my whole life. For example Pinnacle flour and Aproten products. The main difference recently is the better supplements available and with gluten free products freely available in supermarkets. I remember when we had to go to a health food store just to buy Nuttelex Margarine!

When I was seventeen I met my future husband. I pretty much ignored PKU at this stage, sticking to a pretty flexible diet but always eating my supplement. He was and is reasonably supportive. I married and in my late 20’s I began practicing a maternal diet, very successfully I might add but it took a long time to take the plunge and actually have a baby. 14 years after my wedding day my son came into the world. I was 35 when I had him. He is perfectly healthy, and very intelligent. He is now 6 years old, and in 1st grade at school. In Kindy he even received the academic achievement award. My husband and I are very proud of him, and I am proud of myself because I manage to balance family, work, study and my diet successfully. Unfortunately their have been some hard times as well. When my son was 2 years old I became pregnant again but unfortunately I lost the baby in the 19th week. My levels were perfect. Following this I had a few more miscarriages and I think I ran out of time to have another healthy pregnancy. (I was close to 40 years old). My husband wanted me to stop now.

I didn’t mention I left school after doing my year 10 School Certificate. I then did a 4 year apprenticeship in graphic reproduction, even receiving awards for my work. I worked in this industry fulltime until a week before my son was born, and after a year of maternity leave I returned part time. I was retrenched 2 years ago and decided I didn’t wish to travel to the city for this work anymore and took a part time cleaning job so I could spend the days with my son before he was to begin big school the following year. Once he settled into school in the last term of the year I did an aged care nursing course. I qualified and now I work part time home care while my son is at school. I love this.

Since leaving school I have never been unemployed for more than 2 weeks and this proves with PKU you can achieve anything, and live a totally normal life.

Raelene Bolye