Volume 1, Issue 5
‘I want to raise my kids and the thought of not being there to raise your children is...’
For her, every day is golden
Colleen Edwards and her twin daughters Paige and Rachel. Edwards inherited the gene for Huntington’s disease and worries her daughters may it have too.
Presence of Huntington’s disease gene makes family determined to live each day fully
Marisa Babic Staff Writer
C
olleen Edwards bears a heavy burden: She knows her destiny. Edwards, a mother of five-year-old twins, carries the gene that leads to Huntington’s disease, a progressive, degenerative disease that causes certain nerve cells in the brain to waste away, eventually leading to mental and physical decline. Edwards notes the hereditary disease is unique in that you can be tested to see if you the carry the ab-
normal gene – a test she chose to take. “It’s kind of like finding out your fate,” says the 36-year-old White Rock woman. “A lot of people don’t want to know,” she adds. “For me, knowing gave me a kind of power over it in a way.” Edwards inherited the gene from her father, Dan Shay, who was diagnosed with Huntington’s in 2006 when her twin girls were a year old. Shay’s early symptoms began to show themselves as an inability to concentrate. He also started having difficulty performing simple routine tasks, like driving. Reliable and diligent, the former engineer was
Sharon Doucette Photo
suddenly having trouble holding on to jobs. Tests confirmed Huntington’s disease. Edwards wasted no time in getting herself tested for the presence of the abnormal gene. Three months after her father’s diagnosis, doctors confirmed that she too carried the gene. After she recovered from the shock, her first thoughts were about her girls. “I want to raise my kids and the thought of not being there to raise your children is...” she trails off, her voice unsteady. see MAKING EVERY DAY, page 4