Well done to all the parkside people who made it out to the PKU and Me Ball on Sasturday night and helped raise over $21,000.00 which will go towards research into a cure for PKU.
It was a huge effort by Pixie and Tiff to set up the ball in an effort to raise funds for PKU and the night proved a huge success. Jesse, Pixies son was diagnosed with PKU. PKU (phenylketonuria) is a very rare genetic disorder. Jesse is the 1 in 12,500 babies diagnosed with each year worldwide. His body lacks the enzyme necessary to metabolize protein. Left untreated, the disorder would cause him brain damage and progressive mental retardation, we are exeptionally lucky that is picked up by the “heel prick test” done on all babies when they are 2 days old.
Jesse will have to follow an extremely restrictive low protein diet FOR LIFE and have regular weekly blood tests. His typical diet must contain NO – meat, fish, chicken, dairy, eggs, pasta, rice, nuts, legumes etc. His mainly vegetable diet is supplemented by expensive low protein products.
In Jesse’s name, they are raising money for the MDDA (Metabolic Dietary Disorders Association) a registered charity with DGR who support families not only with PKU but all other metabolic disorders. They are an invaluable resource for parents with children that have PKU and other metabolic disorders. They are working hard to fund research into a cure & better treatments which has seen impressive breakthroughs in the past months with human trials happening in the USA.
Follow the link to hear Pixie discussing the night on SEN Program The local locker room.
http://www.youtube.com/watch?v=-rcRqYdJraI
Last Modified on 04/02/2014 23:22