By Mike Williscraft
“I remember saying to Dave, both of us in tears, Cooper still heavy in my arms… this is going to change our entire lives. I meant for the worse. But almost two years later and we’re starting to realize that may not exactly be the case.”
Such were the words of Stephanie Robertson to her husband, Dave, moments after her newborn son, Cooper, had been diagnosed with TSC (Tuberous Sclerosis Complex) at six weeks old.
Since that time, the Grimsby couple have been doing a bit of a juggling act. They realize there is an important story to tell, but how much.
The were determined, however, to ensure some good came from their ordeal.
“As Cooper’s parents our only hesitation in creating the Cooper Robertson Foundation has been in sharing his story. Is it our story to tell? How much do we share? Does he want his story told? We always land in the same space, that the benefits far outweigh our fears,” said Stephanie on the Foundation website.
“Everyone has a story. There is power within our stories. In creating the Cooper Robertson Foundation, we hope to create a community. A place where stories can be told and through these stories hope may be found.
TSC causes benign tumours to grow throughout major organs
of the body. For Cooper, this includes his brain, heart, kidneys and eyes. The effects of these tumours span a multitude of various faculties and require a complex care team at SickKids Hospital in Toronto.
Cooper’s affliction is a rare genetic condition that can be inherited from one parent with TSC or can result from a spontaneous genetic mutation.
One-third of TSC cases are known to be inherited, with the other two-thirds resulting from a spontaneous mutation (neither parent carries the gene).
It is not known why this spontaneous mutation occurs. Nearly one million people world wide are thought to have TSC. There is no cure for TSC yet.
Cooper’s family decided to turn something that was extremely hard and sad into something incredible and change-making – creating the Cooper
Robertson Foundation – which aims to raise awareness of TSC as well as funds to help support the TSC clinic at SickKids.
To date, $30,000 has been raised.
For more information on Cooper, TSC and how to support the foundation, check: cooperrobertsonfoundation.com