After 10 yrs of marriage and many trips to the fertlity specialist, we were finally blessed with our beautiful son Dominic in November of 2005. On the 7th day of his life, our pediatrician called to tell us Dominc had something called PKU and would need a special diet for the first 6 yrs of his life and we were to go to Tampa to see a specialist.
Of course we immediately hit the internet, looking for anything we could find. We soon realized that PKU was much more serious than our pediatrician had indicated. While PKU is not life threatening, we were still devasted. At our first appointment with a doctor and dietitian specialized in the treatement of PKU we learned Dominic would have to be on a severely restricted low protein diet and drink a medical formula for his entire life. How restricted? He would never be able to eat Meat, Poultry, Fish, Dairy, Eggs, Soy, Nuts,or Regular Grain products and we would have to carefully measure all of his food on a gram scale. He would never be able to eat any food in an unlimited quantity. If not treated properly, Dominic could become mentally retarded.
Phenylketonuria is a rare genetic disorder in which the body does not make an enzyme that breaks down one of the essential amino acids, Phenylalanine (PHE). PHE is found in all foods except sugar and oils. It exists in large quantities in foods high in protein. High levels of Phenylalanine are toxic to the brain. Just take a look at the video on this page. If untreated, a child with PKU would experience impaired growth, brain damage and mental retardation. If an Adult with PKU stops treatment, executive brain functions such as mood, concentration and memory become compromised.
Fast forward 6 years. Dominic is on a strict treatment for PKU and thriving. He is happy, healthy and developing as he should. He is extremely athletic, loves art and is doing well in school. The journey has been challenging. We still constantly worry about his brain health. There is no way to know to what extent PKU is affecting Dominic's brain.
Compliance with such a restricted medical diet is difficullt and treatment is often financially challenging. Medical visits, lab work, foods and formulas are expensive, and often not covered by insurance. PKU is a relatively unknown disorder and affects a small number of people. No one famous has it and Oprah hasnt returned our calls, so we wanted to do something to help. In 2008 we started The Florida PKU Foundation to provide support to families in Florida affected by PKU and raise money for PKU research.
While there is a treatment for PKU, we want a cure. Please consider making a contribution of $25 or more to our event.
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