I was finally diagnosed with classical PKU at 2 years and 4 months after showing many symptoms such as head banging , slower to reach my milestones with retreating into my own world etc since I was the first successfully diagnosed person with another person over in Western Australia there was no knowledge of pku in Australia and not much knowledge in the world at this time. I was diagnosed after a medical journal from Dr Richard Koch arrived on the doctors desk the night before with a description of the wet diaper test discovered by professor Willard Centrewall . To my parents and these amazing doctors and my Metabolic team are the reason why I am such an active member of the community.
I am extremely proud about having pku as I love to be able to educate and help people by pioneering the way for generations to come.
Growing up with PKU was hard especially during the 60’s as every ailment was hidden behind closed doors so teachers just did their jobs and that was that until I came along that had to have formula at school and had a specially packed lunch which made me stand out as being different. I was bullied because of taking formula lofenalac to school . When the kids laughed at me or called me names while I was drinking my formula I use to put my formula right under their noses which kept them quiet for a while. Little bottles of milk were at the school for the children to drink usually in the hot sun! I always had a note saying I was not allowed at any time to drink the milk.
My parents had strict rules of the house so growing up I had to follow them like my siblings. I loved playing sports and participated in all of them particularly softball , swimming and tennis. I was an active child and had a normal childhood just managing my pku diet which I like to call lifestyle as diet to me means short term and lifestyle is forever which pku is a lifelong condition. I played with the neighbourhood children etc.
I am the eldest out of my siblings and had a lot of responsibilities growing up with household chores.
The hardest thing for me about pku was the teasing and bullying I received at school, being so restricted with food and the formula I had to take particularly in my earlier years . Not to have the freedom like the regular person with food. Eating out etc
The best thing about PKU is the many conferences/retreats I have been able to attend not only in Australia but around the world such as the NPKUA conference in the US which I am proud to say that I have been to every one of them, the ESPKU in Ireland where I was speaking about the history of my life . I have been able to educate through the pku Association Of NSW inc which my father and a great family friend and a doctor formed in 1968. Back then the Association was named The PKU society of NSW. I was awarded the medal of Australia for all my work for PKU in the health community through the PKU Association of NSW inc where I have been president, public officer, fundraiser, event etc. I am on the teen and adult committees for the PKU Association Of NSW and MDDA. I am now one of the international committee member on the PKU Association OF NSW, inc I love being involved with both of these wonderful associations here in Australia with people who work tirelessly for make life better for individual and families living with pku on a daily basis.
I am the only one that has been diagnosed with pku but recently my younger sibling has been diagnosed with young onset dementia which has hit the family hard but will live life positively going forward.
During my teenage years the medical professionals started taking people off diet which affected me as I was told by one of the medical staff that I could go off diet while I was working in a childcare centre looking after this dietitian child.
At this time I was on such a horrible formula and was so relieved even though my parents didn’t like it at all.
I would tell my 15 year old self never to stray from the diet that the formula and restricted diet works and help you to make good sound choices in life and helps for you to stay focus being the healthiest you.
Find a career that you love and do everything you can to get the right qualifications and to enjoy life!
The thing I would love to relay to people is that treated PKU can do everything that they wish to in life with the proper support! People with treated pku are as intelligent or more intelligent than the average person and have experienced and seen a lot more than some people and should be listen too.
My earliest memories about having PKU mum used to take me to the hospital for a fasting blood test in the morning as we drove past the Arnott biscuit factory just loved the smell of those biscuits cooking . The blood test were awful back then the nurse use to stab the needle into my vein in my arm if she didn’t get enough blood she would stab all of my fingers which was like torture but every now and again if I got a good blood test mum would buy me a inexpensive toy.
I really was excited to meet somebody else with pku as it meant that somebody else in the world ate like me! I remember shaking my formula which was maximum xp and I mixed it with water and green cordial and shook it until it was all mixed in. One time I was shaking my formula at the edge of the kitchen looking out to the dining room the lid of my shaker cane off and the green maximum went all over our cream carpet and over the table the stunned and horrified faces on my family was so funny even though I was in trouble and had to clean it up! I love being involved with pku individuals, families and associates both here in Australia and around the world.
I absolutely love National PKU News and all the work that Virginia and all of the hard working committee. Congratulations on the great support that all of you give the pku communities everyday it is very much appreciated.