Listen to Burju Sari describe her life-changing meeting with Ellen Mazel, Perkins’ CVI Program Director:
So we met with Ellen Mazel. She was extremely nice and full of knowledge, and for the first time, someone was telling me that it is going to get better.
So I remember after that visit I called my mom who is in Turkey, and she doesn’t speak English and I told her, “I met someone- a teacher from Perkins and she told me everything will get better. Mom, can you believe it?”
Immediately she asked me if I understood her correctly because my English was very limited back then so she wasn’t sure if I understood the English part. So Ellen explained to me what CVI is and its characteristics. I was very confused and puzzled with the term “Cortical/Cerebral Visual Impairment.”
Everything that she was telling me about CVI explained Omer’s visual behaviors. I was kind of relieved because I had an answer about his behaviors.
I asked Ellen so many questions and got amazed with her answers, and it all started – questions, more questions, and then they all turned into stories and memories that I was witnessing with Omar each day. I remember asking Ellen if CVI is a rare condition due to the fact that we never heard about it or none of the doctors in EQ mentioned it.
She started telling me about the CVI world and how much work needs to be done in terms of getting the right and early diagnosis. Educating teams, parents and everyone who is involved in this world. §
Burju Sari is the mother of 10 year old twin boys. Burju’s and her husband’s CVI journey started when they found out one of the twins has periventricular leukomalacia. When Burju met her son’s TVI in 2010, she knew she needed to do something for other families and their kids. Her son, who has the diagnosis of Cerebral Palsy and CVI, has been an impetus for her achievements in supporting, educating and advocating for students, families and educators. Burju received Master’s in Education for Teaching Students with Visual Impairment at UMass Boston. She is currently employed with Perkins School for the Blind Community Programs as an Itinerant Teacher for Early Intervention. She works closely with Early Intervention families and service providers consulting them around how to support children with visual impairment.
What’s your CVI story? We’d like to hear it.
Join our private CVINow Facebook Group for parents and families, and share.