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Fragile X Doctor, Researcher Cares for the Whole Family

Rebecca Fishman felt alone when she learned her son had fragile X syndrome. She didn’t know anything about the rare genetic condition that can cause an array of physical and mental difficulties, similar to autism.

After meeting with several doctors, Fishman found what she was looking for with Elizabeth Berry-Kravis, MD, PhD, at Rush. Berry-Kravis is one of the foremost experts in fragile X treatment and research, but Fishman found more in her than skills and accomplishments.

“She doesn’t just take care of the person with fragile X, she cares for the whole family,” said Fishman about Berry-Kravis. “She becomes part of your life, an extended part of your family.”

Fishman’s son was diagnosed 20 years ago at age 2. His treatment with Berry-Kravis began as mostly medical. Along with fragile X, he was also epileptic and his immune system wasn’t working well. But with care and intensive guidance from Berry-Kravis, today he is an independent young man.

Aside from medical treatment, Berry-Kravis helped coordinate with his teachers and school administrators about his needs. She would field calls and correspondence from Fishman about new studies and treatments at all hours. Berry-Kravis’ personal approach extended beyond the clinic, even while practicing and researching full time. 

Fishman’s sister Cheryl Cooper, MD, also has a son born with fragile X, and the Coopers sought treatment with Berry-Kravis as well. Cooper also saw her son develop well with Berry-Kravis’ help.

“Dr. Berry-Kravis is really with you the whole way on this lifelong journey,” Cooper said. “She makes you feel like you can really handle it, no matter the obstacles.”

Fishman and Cooper both decided to donate to Rush in support of Berry-Kravis’ efforts, after experiencing firsthand the great lengths she goes to take care of her patients and their families.

“She supports people unconditionally,” Fishman said. “Whether she’s on her vacation or she’s with her kids, she stops and helps. That’s just how she operates.”

While Fishman and Cooper both have seen their sons reach higher levels of functioning under Berry-Kravis’ guidance, they also experienced setbacks, such as promising clinical drug trials that were cancelled by the pharmaceutical companies before benefits could be fully reaped. But that hasn’t deterred their faith in Berry-Kravis or that better fragile X treatments, and even a cure, are possible.

“Somehow we will wipe this disorder out, and it will happen in part because of Dr. Berry-Kravis,” Fishman said. “The families are all determined with someone like her leading the way.”

Read on for more Rush philanthropy news.

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