The story of Alicia
Hi, my name is Alicia. I am an only child who was born three weeks early in November of 1959. At this time they had no Newborn Testing for PKU here in the United States. However, soon after I was born my mother became worried. She stayed in continuous contact with my Pediatrician. He had just read an article concerning the “Wet Diaper Test,” a way to test someone for PKU.
My doctor called my mother and asked her to bring me into his office because he had a suspicion of what the problem might be. He used a stick (kind of like a popsicle stick) which was put into my diaper that would turn a green color if the test was positive for PKU. The same afternoon of the test, the doctor called my mother to tell her that the test was positive for PKU and he was referring us to a hospital in Augusta, Georgia for further testing. I was confirmed to have classical PKU when I was 4 months old. There were very few infants diagnosed in the United States at that time. As you can imagine, my parents were devastated and had no clue as to what PKU was or what would happen in the future.
I was placed on a strict low protein diet and PKU formula. I can still recall not liking the taste of the formula. My formula was very expensive, even back in those days. My parents had insurance, but the insurance wouldn’t pay for my formula and at times my father would be working 2 jobs just to help pay for it. My mother managed everything to do with my diet from making my formula to measuring my food intake. I seemed to be doing great over the next several years. Then, suddenly, when I was 5 years old we received a phone call from my clinic and they wanted to see me. At this time some thought that diet was not for life and I was taken off my diet. I can vividly recall what I had to eat for my first meal off diet. It was at lunchtime and they brought me some BAKED HAM! Little did I know that this was the first bite of a lifelong struggle for me. I remained off diet until I was 44 years old (2004). It was at this time that I decided to look into going back on diet due to some problems I had begun experiencing. I had lost my last job due to emotional outbursts and I felt that I needed to see about trying to get some help. I spoke with my mother and she called my old clinic on my behalf. I can remember my mother telling me that the doctor said “Get her in here, I don’t care about the money issue. She needs help to get back on diet.” So within just a few days I was on my way to clinic again for help. It was determined at that time the best course for me was to go back on the diet after having been off it for so long. It was going to be a struggle, but for my health I had to do it. My doctor slowly took me off of all of the bad foods I had been eating for so long and got me started on Xphe Maxamum™ from Nutricia.
First I stopped eating meat and cheese over the next couple of months and then the t a little later on. I’m currently still on diet, although I do sometimes struggle trying not to eat all the bad foods which I’ve had in past years. I know that I feel better when I’m on diet and have more energy, not to mention that my husband can put up with me so much easier. I am just so thankful for a persistent loving mother, wonderful pediatrician, great support, and a patient loving Husband. I’ve always said that, “God could have made me normal, but he chose to make me with PKU and now what can I do with that?” I choose to help make the road a little easier for those coming behind me by doing whatever I can to spread the word about PKU.
#RareDiseaseDay2020