A Family's Brave Quest To Uncover A Cure For Daughter's Rare Syndrome
The Iannuzzi family found themselves in a terribly difficult situation. Parents Jennifer and Christopher had just learned that their daughter Sydney was living with a rare genetic condition called Smith-Magenis Syndrome (SMS), and there was almost no information or guidance out there about how to help her. So the Iannuzzi family took it upon themselves to launch the initiative to seek treatments and a cure for Sydney and other children like her.
"It was a day that really changed our lives as a couple," Christopher remembers, of the day that he and his wife got Sydney's diagnosis. "And changed our lives as a family."
"There we were, in front of the computer, Googling this syndrome," says Jennifer. "That began the long uphill battle of learning."
And that uphill battle eventually led the Iannuzzis, with help from an anonymous donor, to establish an organization dedicated to the study of SMS, called the SMS Research Foundation. They've connected with other parents of kid with SMS and together are leading the charge to research the condition.
The goal, Jennifer says, is to find "a therapeutic intervention that can make life easier and better for these kids and families." She encourages parents who find themselves in the frightening situation that she and her husband did to never give up, and keep searching for a solution, no matter what.
This video was produced by Tracy Chevrier and shot/edited by Chris Panton. To see more inspiring family stories, visit our YouTube page!