Ellen has been an important advocate for achromatopsia. Ellen’s fourth daughter, Katy, was born with achromatopsia, which means she’s visually impaired, light sensitive, color blind, and her eyes bounced (nystagmus) and crossed (strabismus). She was also mentally delayed. Ellen’s determination to help her daughter led to a spiritual growth for both mother and daughter. Katy’s IQ surged from 55 to 150, and finally, nine years later, the diagnosis. This journey is told in My Blindy Girl – a mother’s journey through achromatopsia.
Ellen Tomaszewski has been a storyteller all her life. At first she used the tales to cover her butt (AKA lying); now she tells stories to entertain others. About writing Ellen says, “Writing is deeply emotional. I relive difficult times and experience those emotions again. I put myself into every book and I love doing it.”
At the core of Ellen Tomaszewski’s memoir stands the author’s deep concern for the child. Make the child as self-sufficient and capable as possible. She writes with poignant honesty about issues that include advocacy, prejudice, discrimination, her daughter’s third-grade depression and attempted suicide, and the importance of hope. Written in a creative non-fiction style, chapters of My Blindy Girl read like short stories yet work together to tell the whole story.
“In writing My Blindy Girl, I wanted to share the difficulties as well as triumphs of parenting a child with this disability,” the author says. “Most people have never heard of achromatopsia. I wanted to educate them. But more important, real life goes deeper than mere events. We all respond to circumstances with our spirits. I see myself as an observer of the soul.”
My Blindy Girl is available in paperback, large print, audio CD, MP3, and Kindle versions. Visit www.ellentomaszewski.com to order your copy in any format. You can follow her on twitter at ellent_writer or go to amazon.com. You can find her on Facebook, too.
First Achromatopsia Convention
Mrs. Tomaszewski organized and acted as master of ceremonies for the first ever Achromatopsia convention in Dallas, Texas on July 3, 2008 in conjunction with the National Federation of the Blind convention.
The day also included a panel discussion in which Ellen Tomaszewski, Dave Goggin, Kathryn Mack, and others answered questions and facilitated discussion among audience members covering issues such as parenting a child with achromatopsia, school and the IEP, colored lenses, peer pressure, acclimating to the environment, traveling without driving, dating, and marriage. Ellen Tomaszewski also spoke on writing her memoir, My Blindy Girl – a mother’s journey through achromatopsia. About the convention Kathryn said, “Before the convention I met only one other person with achromatopsia, so the convention was totally awesome for me. It was fascinating just to share stories about how we relate to the world.”
The convention also presented videos from Gene Grindstaff (Political organizing and advocacy for research and treatment of achromatopsia) Andras Komaromy (Gene therapy research update) and Susan Kohl (Updates in Genetic Research).
Dianna Wheaton, M.S, PhD, research scientist and genetic counselor of the Retina Foundation of the Southwest in Dallas, outlined the Foundation’s research program. Her team collected blood samples from people with achromatopsia and their family members, which were then tested for gene identification. James Fulton, noted eye specialist, spoke on the history of achromatopsia research focusing on terms, diagnoses, and physiology of achromatopsia.
Second Achromatopsia Convention
Ellen was instrumental in the second Achromatopsia convention also. She joined forces with Dave Goggin and Rob Cancilla to create a triumvirate of energy. Ellen organized the money, Rob found the venue, and Dave coordinated the presenters. The second convention was held in August 13-14, 2009 at the Chicago Lighthouse for people who are blind or visually impaired.
Ellen’s daughter, Kathryn Mack, spoke on, “College and beyond – learning how to advocate for yourself.” She focused the legal and emotional issues encountered in navigating higher education with a visual disability.
Ellen owns and operates Etcetera Press, a local publishing company dedicated to helping authors publish quality, low cost books.
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