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Real Stories from People living with Cerebral Palsy

Sandy’s Story

Sandy is the parent of a child with cerebral palsy and the Board President of Gio’s Garden, a non-profit organization in Wisconsin whose mission is to nurture and strengthen families with special needs children by increasing their access to services. Before becoming a full-time mother and advocate, Sandy worked for 14 years in depression research.

Photo: Sandy with her daughter“Every aspect of our lives is shaped by the over 1200 hours a year it takes to take our daughter with cerebral palsy to her more than 200 appointments with 9 doctors and 5 therapists; deal with insurance; find needed equipment and services; do therapy with her at home; address her behavioral issues; spend extra time on her school work; supervise almost everything she does to maintain her safety and maximize her independence; and make the extra time for her to do things other kids do so quickly and easily. It means staying where we have supportive family and have learned how to navigate systems; giving up my career because of my family’s needs; and becoming an advocate for families with children with special needs. It has forced us to acquire new skills and re-focused our lives. It has made us intentional parents who constantly think about how we can keep our daughter’s needs from taking over our family while making sure her brother’s needs are also met. It has brought us closer together as a family, taught us the value of family and community, and helped us learn to cherish every little thing about both of our children.

Having a child with special needs changed everything: because I now know the effect raising a child with special needs has on the entire family and how hard it is to learn about and access the multitude of needed services, I feel compelled to help other families through this process any way I can. My husband and I have all the advantages a parent of a child with special needs could hope for—supportive family and friends, relevant education and training, a good income, and good insurance—yet we have still experienced challenges. If we have not had an easy time of it, how do families who are not as fortunate as we are do it? And how could I sit back and watch that happen when the focus of the career I gave up for the sake of my special needs family had been resilience, stress, and coping?

Although cerebral palsy is a disorder that can impact any and all aspects of a person, it does not define who that person is. He or she still wants a high quality of life and parents of kids with cerebral palsy want the same thing for and to do the same things with their kids that other parents want.”

CDC would like to thank Sandy for sharing her personal story.

 

Cynthia's Story

Photo: Cynthia and her daughter Cathryn

"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 Stars for sharing this personal story.

 

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

 

 

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