Real Stories from People living with Cerebral Palsy: Cynthia

“Is this hopeless?” Cynthia Frisina Gray asked upon learning about her daughter’s diagnosis of cerebral palsy in 2001. Cynthia knew there was a possibility that Cathryn could have problems—she was born prematurely—but she never imagined the difficulties that lay ahead.

Though she seemed fine at first, after several months, Cynthia began to notice that sometimes Cathryn seemed very floppy, almost like a rag doll. Other times, she seemed to stiffen. “I knew she wasn’t hitting the same growth and motor milestones like my older daughter,” said Cynthia.

Several doctor’s appointments later, she finally received a diagnosis of cerebral palsy. Cynthia immediately went to the Internet searching for anything and everything about cerebral palsy. She felt frustrated by the limited information she could find that specifically addressed the needs of parents.

Cynthia expressed her frustrations to Cathryn’s orthopedic surgeon, who connected Cynthia with another parent of a child with cerebral palsy: Anna Marie Champion. Cynthia and Anna Marie set out to understand how they could help educate other families about prevention and treatment. But they weren’t sure where to start. They read about spina bifida, a disabling birth defect of the spine, and about the discovery that folic acid can help reduce it. “That’s what we want—our ‘folic acid’—something that could help prevent cerebral palsy,” Cynthia said. “We found out that we can’t prevent and treat cerebral palsy without understanding the root causes of it.” Tracking the number of children with cerebral palsy is the first step to understanding the characteristics and finding the root causes.

“Watching Cathryn go through the pain of two major orthopedic surgeries at such a young age is hard, but we know it’s necessary to help her walk,” said Cynthia. Today, Cathryn is thriving but her mother knows there will be many challenges ahead. “Like all parents, I hope and dream about my daughter going to college and having a fulfilling life,” said Cynthia. “I also hope that one day we know what causes cerebral palsy so that we can help others.”

CDC would like to thank Cynthia and Reaching for the Starsexternal icon for sharing this personal story.

If you would like to share your personal story, please contact us at cdcinfo@cdc.gov