My CHEO Story
My third child was born five weeks early in 2013. From the first day, I knew something was special about her. We spent a lot of time at CHEO consulting with specialists from across the disciplines, looking for answers. Just before her second birthday, she was admitted because of a fever of unknown origin that lasted for 7 consecutive weeks. During that admission, genetic testing was done and that’s when we discovered that she was born with an ultra-rare deletion on the 7th chromosome. There were no other known cases worldwide, and not much was known about it. Thanks to social media, I was able to identify 2 other families with overlapping deletions. Together we exchanged information on our children’s symptoms, and searched for more clues. I was fortunate enough to have amazing doctors at CHEO who took an interest in the research I presented them. From there, they continued the genetics research and published an article on our daughter’s chromosomal deletion.
Why I'm involved
Families have a pivotal role to play in advancing knowledge and research; I love that CHEO is recognizing this and promoting patient/family engagement in a real way.