Five-year-old Victoria Terrio loves to run around and play like any child her age. The only difference, Victoria has CHARGE syndrome. She was born with her eye retinas not completely formed, a bone blockage in her left nare, retardation of growth and her windpipe attached to her esophagus.

She was a grunt worker in a factory and now holds the title of first-ever international director of the CHARGE Syndrome Foundation. Lisa Weir, the only Canadian sitting on the foundation’s board of director’s talks about how she got started with the foundation…