“The doctor told Mum to put me in an institution and concentrate on my sister”

I was diagnosed with PKU at the beginning of 1961 at 2 years 4 months in Sydney, NSW. PKU was treated so very differently back then, there was very little knowledge known in the world at this time. During the 60’s families kept ailments and sicknesses their kids had behind closed doors. There was no awareness for disorders back then so here we were informing kindergartens and schools about PKU, what was known at that time and the fact that I had to live on a special diet which certainly drew so much negative attention. Mum came up to the kindergarten and school for every recess and lunch break to make sure I didn’t swap my food with anybody as the teachers weren’t there to monitor what I was eating.

When I was in my teens I was approached by the medical professionals who then believed that teens with PKU could come off diet. I did which was such a bad decision on my behalf. Over the 18 years I was off diet my symptoms grew worse overtime, even though I was working full time I was lucky to be working with such a great team of people who put up with my temper tantrums, mood swings, tremors, eczema, exhaustion, etc which all led to other health problems. I almost lost my job. My family were concerned at how badly I was coping so mum made an appointment with the dieticians at The Children’s Hospital at Westmead for me to get back on diet which I did.

I like to refer to my PKU diet as a lifestyle not a diet. When I hear the word diet it usually suggests that you have the choice of maintaining it for any length of time you choose. As we know the PKU diet is “diet for life”.