Video produced for the E-Journalism program at Loyalist College

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.

When kids are going through their lunchbox at school, Victoria has to sit in a chair for an hour while being fed through her feeding tube.

Last winter was the first time in Victoria’s young life that she was able to play in the snow.

What does the future hold for young Victoria? Only time will tell.

Audio feature produced for the E-Journalism program at Loyalist College.

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, why she felt it was important to bring a Canadian influence, starting the first CHARGE group in Canada and the reason Canadians aren’t informed enough about CHARGE.

Her duties for the CHARGE Syndrome Foundation are secretary and chairperson of the education committee.

All the while chronicling the day-to-day happenings of her nine-year-old daughter, Kennedy who has CHARGE syndrome in “The Adventures of Kennedy” blog.

Listen to audio feature: