After Kate’s birth in November 2012, I spent hours reading online and learning about these two syndromes. Both of these syndromes have given Kate, her parents, and her brothers multiple challenges to overcome.
According to Wikipedia, Dandy-Walker Syndrome is “a congenital brain malformation involving the cerebellum and the fluid filled spaces around it. A key feature of this syndrome is the complete absence of the part of the brain located between the two cerebellar hemispheres (cerebellar vermis). The letters for CHARGE Syndrome stand for coloboma of the eye, heart defects, atresia of the nasal choanae, retardation of growth and/or development, genital and/or urinary abnormalities, and ear abnormalities and deafness. CHARGE syndrome is the leading cause of congenital deafblindness.”
Kate and her family would like to attend the 12th International CHARGE Syndrome Conference in Chicago, IL July 30 – August 2, 2015. Kate would like her parents and brothers to learn more about what to expect and how to best help her as she continues to grow and face her unique set of challenges. She would also like for them to be able to associate with other families of CHARGE children so they can learn from them and build an expanded support system.
The conference has various seminars given by professionals in four topic areas of behavior, education, adult issues, and medical issues. There will also be classes for her brothers to help them understand and learn how to cope with the everyday family challenges of having a sister with CHARGE.
Our shared enthusiasm for education is what has brought us together through “A Great Day’s Work.” I know this might seem like an usual blog post, but it’s not so unusual when it supports education and individuals who are wanting to give their best.
Last week I asked Rebekah’s permission to reach out to my admin friends across the world in an effort to support her family’s request for additional resources to continue their learning and expand their support system to best help Kate. Rebekah and her family would welcome any additional resources that we can help to raise to support their education. Click here to support Kate.