For the Kelly family, Chiari and syringomyelia are a family affair. It took 20 years for mom, Jennifer, to finally receive a diagnosis of Chiari after years of being dismissed by various physicians. She lives in New York with her husband, Tom, and children: Michael, Katie, and Gracie.

Although she was told it was very unlikely her children could be affected, Jennifer had a nagging suspicion they were. She had to fight to get MRI’s for her children, and it was then that her worst fears were confirmed. All three had the condition. Gracie, the youngest, was the most seriously affected. She had a dangerously large syrinx and needed immediate surgery. Today, mom and two of her children have undergone surgery for the condition. Jennifer and her family continue to advocate for greater awareness and research. Watch the video below and hear Jennifer share the struggles she has faced.

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