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By Bill Brummitt
This routine screening had been initiated at the Adelaide Children’s Hospital
by biochemist Mr Geoff Hill and Dr John Covernton. There were no dieticians at
the hospital in those days but thanks to the dedication of nursing sister
Alison Morrissey, I was given a very good start – on Lofenalac imported from
the United States along with carefully calculated millimetres of milk,
depending on my blood levels.
My father was a General Medical Practitioner and kept up to date with all the
available information on PKU. He also inspired my mother with the words, 'It’s
a challenge'.
My mother was a teacher/librarian. When she returned to her profession, she was
inspired to write a booklet called Robin and I Explain PKU because staff
at her school asked her for more information about the condition. This was
because one of the children at the school, Caroline Thorpe, had PKU. When
Caroline read my mother’s rhymes she responded by illustrating every page so
well that South Australian Child Adult and Adolescent Health Services printed
five hundred copies as their contribution to Hidden Disabilities Week in the
Year of the Disabled in 1981. It also contained a section pitched at adults and
went into a second printing.
As a child I somehow got used to positive messages about what was good for me
and what was not. I had to take extra food when I took my own treats to parties
as it was always made to look so good that other children inevitably tried it!
Later on, my way of dealing with contemporaries who dared me to eat their food
was to ask whether they wanted me to throw up on them! I also enjoyed giving
them the challenge of trying my Aminogran protein supplement- and very few
could get past the smell to the tasting stage. When I went on school camps the
fact that I had orange juice on my cereal was always a talking point. To this
day I can’t imagine having anything else.
At the end of my schooldays I went on an exchange to Texas for six weeks and
later, after graduating with Honours in Economics at the University of Adelaide
I gained a Master’s in Economics at Queen’s University, Kingston, Ontario in
Canada. My ‘magical potion’, Aminogran, manufactured in England was freighted
over to me!
On returning from Canada I moved from Adelaide to Canberra to commence a career
in the Australian Public Service, initially with the Department of Prime
Minister and Cabinet. Fairly early in my time in Canberra I married my wife
Jane, who is also an economist, and we have two young daughters, Naomi, aged
eight and Olivia, five (neither with PKU). I often cook for the household –
including meat which I don’t eat, whereas they never hesitate to try my
vegetarian ‘specials’. For Naomi and Olivia, no breakfast is more tempting than
my low protein loops with orange juice, cream and brown sugar!!
Four years ago I went to Seoul, South Korea, as a diplomat with the Australian
Department of Foreign Affairs and Trade. We spent three years there, with one
of the highlights being Olivia’s birth. Koreans love their meat so there was
lots of food that I couldn’t eat but also some things, like bib-im-bap (a rice
and vegetable dish) and Kimchi (spicy pickled vegetables) that I could eat and
for which I developed a real taste.
When I was in Korea I also did quite a bit of work promoting the benefits of
staying on the diet to young Korean kids with PKU, who were really the first
generation in that country to be treated from birth. Each summer I went on a
camp with them and their families. The camps were a great way of abandoning my
privileged expatriate cocoon and living like a true local for a few days. I
also became good friends with the dedicated team of doctors raising awareness
of PKU in Korea and did quite a few media interviews. Overall, the work I did
with Korean kids with PKU, and the advice I could give their parents as an
adult PKU, was one of the most satisfying things I have done in my life. I
could truly see I was making a difference.
We are now back in Canberra where I work for the Australian Treasury. Recently,
I went to Peru for a series of Asia Pacific Economic Cooperation Meetings. I
have also been to China and Japan with the Australian Treasurer.
My message to parents of kids with PKU is that their children can do anything
and I firmly believe it’s true.
September 15, 2008