To celebrate PKU awareness month, we turn to our resident PKU patient and expert, Kevin Alexander to share one of his recent documentary clips on living with this unique, rare disease.
Many families affected by PKU are alone in their struggle. They don’t know anyone else in their area who also lives with this rare disease. But for the Mazonne and Cantera families things are different. Diana Mazzone and her family received their diagnosis first and began the struggle of managing the PKU lifestyle. Then a few years later Diana’s sister in law had a child with PKU. Now these two families are able to share in this journey together as they raise their children to properly manage their diet and achieve their dreams. This film was recorded on location at the Metabolic Dietary Disorders Association weekend conference in Sydney, Australia.