On Saturday, Rosie Pallone, 5, and her family will be meeting their friends at the big truck in downtown Sparwood at 11 a.m. Rosie will then lead them on a 1.6 km (20 minute) stroller-friendly walk through downtown Sparwood as part of the first national CanPKU Walkathon.
Rosie has Phenylketonuria, or PKU, a rare condition that is screened for at birth and puts her at risk for cognitive impairment if left untreated. Canadian PKU and Allied Disorders Inc. (CanPKU) Vice President and Rosie's mom, Nicole Pallone, invites everyone to join in the walk.
"The primary goal is to raise awareness of this disease and to show PKU patients that their community cares and supports them in the challenges they face," said Pallone. "We encourage everyone to sign up for the walk and collect pledges."
Proceeds from the walk will go to CanPKU, a non-profit association that provides support and education to PKU patients and families across Canada, and also advocates to the various provincial governments for better access to care and treatment options.
"Living with any rare disorder is extremely difficult, and the strict treatment regime required to protect PKU patients’ brains is challenging to adhere to. When you add in the refusal of the B.C. government to pay for necessary treatments, it becomes virtually impossible," said Pallone.