Debbie Colyer

I was born in December 1958 - a healthy baby but as time went by I was a little slower reaching my milestones, retreating to a world of my own. During my first two years of life mum took me to the GP constantly trying to find our what was going on with me.

Eventually at 2 years and 4 months I was diagnosed with PKU and spent the first month after my diagnosis in Wade House at Camperdown Children's Hospital in Sydney so that the medical professional could see what food did to me. One day I would have a roast dinner and the the next day I was eating a raw carrot, potato. When I was released my mother was given a list of a few foods that I could have.

My parents treated me exactly the same as my siblings, they gave me a lot of unwanted attention, gave me extra tutoring so I wouldn't fall behind in class. also gave me the same opportunities in life as my siblings. During the 60's their wasn't any awareness of medical conditions and anybody with a medical condition or disability was kept hidden away behind closed doors. Life was very different than today as there was a real negative stigma with people generally if they did see a person who has to live life differently to everybody else which my mother tried to protect me from as much as possible.

When I started school and for some time after, mum came during recess and lunch so I didn't swap food with any of the other kids which drew negative attention to me. Despite this I was able to make some friends at school and was teased most of the time. I had to take my formula to school which was lofenalac as I had to have some much of it and this was the only way that I could get my daily dose of my formula in. Lofenac was a very concentrated formula which I actually mixed with lemonade which eventually my body got used to. When I was invited to birthday parties I was too scared to eat anything which occasionally the mother of the birthday child would ring my mother concerned that I wasn't eating anything, then mum would drop off food for me or work out food that was at the party with the mother of the birthday child letting her know what I could eat. I got involved with softball, played tennis, rode bikes, scrapped knees and played with the neighbourhood kids, during my childhood always trying to fit in.

I was always being sent out of the room at the medical appointments while discussions with the medical professionals and my mother took place. As I grew up being the only PKU person in my family and school, etc I always thought I was going to die as I didn't know anything different.

When I was 11 or 12 years old my formula changed which threw me as it was more disgusting than the lofenalac! I was put on PK Aide 2 which was the tyrosine, calorine which was the sweet powder, sugar, then we had to mix it together. Then I had to take kitavite tablet, ketavite liquid, furgon tablet, furgon liquid and then a calcium tablet three times a day. I had to have 1/4 pint of cream everyday, the reasoning was as my body will be changing they were worried about my calcium levels. I really struggled having this to the point that when I was told that I could go off diet I really was excited and felt free for the first time in my life as during the 70's the medical professionals were taking people off the low phenylalanine diet all around the world.

I spent about 18 years off diet as time went by so did my symptons of being off diet grow! At first I was having a vegetarian type of diet without formula, I was so moody, angry, was so lethargic and tired all the time and the list goes on. The negative symptons like I have mentioned grew worse with time off the diet.

It wasn't until my mum noticed that I was not doing well at all that she made an appointment with the medical staff at The Children's Hospital at Westmead to get me back on diet. My phenylalanine levels were 2500 micro-moles when I restarted the diet. Going back on diet was the most difficult time and the best thing I have done for myself. The first week back on diet I was taking maximum xp, almost throwing it up for the first week, but I persevered and eventually my body got used to it. Not long after starting the diet I started looking for information about PKU and attended my first meeting with the committee of The PKU Association of NSW Inc, eventually becoming a committee member. As my passion is to help other people and families living the same lifestyle as me. Working full-time in the workforce was difficult because I had to be super organised having food prepared for lunches.

Today I am doing well generally thanks to lots of support from family and friends. I find that giving back to the community is so rewarding and through giving support I am able to help myself for my own wellbeing.

Debbie