Are you wondering why it might be worthwhile for you or your child to take part in a patient-oriented research study? In our “What’s My Why” blog series, hear from five CHILD-BRIGHT patient-partners on the many reasons they decided to get involved in research.
In this post, Donna Thomson, Citizen Engagement Council member and Patient-Partner with the Strongest Families ND and READYorNot™ research projects, shares her “why”.
As a child, I hated science. I flunked math year after year, and daydreamed my way through grade nine biology. Luckily for me, I went to high school in what I call ‘the hippy years of education’ when students could take whatever classes they wanted. Required courses simply didn’t exist. Bound for theatre school, I dropped anything science-related after grade nine and concentrated exclusively on fine arts and humanities. I remember thinking, “I’ll NEVER need math or science!”
Fast forward to 1988 when our son Nick was born with severe cerebral palsy. His greatest challenge, as an infant, was digesting food. By 1990, he was vomiting almost everything he ate and drank, so my husband and I opted for a surgical procedure to prevent the backflow of food in his esophagus. Almost immediately a storm of much worse symptoms put us into crisis mode. I felt Nick might die, but test results kept coming back ‘normal’. Doctors were mystified. A discharge summary in 1991 read as follows:
“Nicholas has significant problems with gastrointestinal symptomatology including episodic retching, vomiting, pain and ongoing severe constipation. We have tried various motility medications and antacid medication with only limited success.”
Having a child with severe disabilities, medical complexity and ‘normal’ tests results had two effects on me: first, I was desperate with worry; second, I transformed into a tireless hunter for information. I wanted badly for someone to understand what was happening to Nicholas and how to fix it. I asked every other parent in our town’s disability community whether their child experienced similar symptoms. None had.
Prior to the internet, intrepid parents would somehow procure copies of medical journals and share them in brown envelopes via Canada Post. Worry made me abandon my sense of propriety and, following the lead of other fearless ‘medical moms’, I picked up the phone and called the authors of those journal articles that seemed to describe my son. Every single one of them was kind, generous and interested. I decided then that research was the path to getting answers that were unanswerable at our children’s hospital.
Over the years since high school, I’ve learned two things about science that made me love it:
Science is a lot like art because it begins in the imagination, and
By participating in research, we can ease particularly challenging effects of my son’s disabilities while at the same time helping others by generating new knowledge.
For me, participating in research with Nick helps me feel like a good mother.
Nicholas and I have participated in many research studies. We feel like we’re part of something important, something optimistic. We know we are making a positive difference by learning more about Nick’s disability while giving back to other families by getting up close and personal – with science.