A Veterans Day Event Revealed How Much My Daughter Can Do

Jackie Babiarz avatar

by Jackie Babiarz |

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When our daughter Cammy was almost 2 years old, she was diagnosed with a rare disorder called Rett syndrome. Among the things Rett can steal from our children is their voice.

In our community, we often play a game in which we ask, “If our child could have one thing back from Rett, what would it be?” After Cammy’s diagnosis in 2011, I would have said I wanted her voice back, without a doubt. I wanted — no, I needed — to hear her say things like “Mom and Dad” and “I love you.”

The following year, Cammy was in school and had begun learning to communicate with a Tobii Dynavox eye-gaze device. It was powerful to see Cammy fix her eyes on a word or picture on the device and have the computer read it aloud, communicating her thoughts. She understood that it was a small way we could unlock her thoughts and ideas and help her participate in conversations.

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The Girl Who Told Me With Her Eyes That She Understood

That year, Cammy was asked to be the greeter at her school’s Veterans Day event. I was incredibly proud, but also very nervous. She hadn’t used her device in front of a crowd of people yet. Would she get overwhelmed and rely on her usual coping strategy of closing her eyes and pretending to fall asleep? Or would she love the attention and thrive? Cammy’s speech-language pathologist reassured us that she would be by Cammy’s side the entire time.

The morning of the event, Cammy wore a blue and white striped dress, white leggings, and a red bow to honor the veterans. Her communication device and wheelchair were decorated with American flags and red, white, and blue stars. She looked adorable and confident in taking on the role of program greeter.

communicating with Rett | Rett Syndrome News | Cammy sits in her wheelchair with her eye-gaze communication device propped in front of her. She is wearing red, white, and blue clothing, and her equipment is decorated with American flags and stars in honor of Veterans Day.

Cammy greets visitors during a Veterans Day event at school on Nov. 9, 2012. (Photo by Jacqueline Babiarz)

Cammy and her American Girl Doll welcomed visitors when they came through the school door. Cammy absolutely loved the attention, and smiled with pride. She was able to unlock her hands to wave. Using her device, she told the veterans, “Thank you for your service.”

That event was a milestone for us. It made me realize that Cammy’s actual voice would not be the first thing I’d want back from Rett syndrome. It revealed that Cammy could participate in school events, and reinforced just how much her team at school believed in her. Finally, it fueled Cammy to continue showing the world just how much she can do.

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Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.

Comments

Jill Johnson avatar

Jill Johnson

Great article from 2012 - many of us would like to know what Cammie is doing now. Can we get in touch? I'm sure my (typing) Rett daughter would love to chat with her ..

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Jackie Babiarz avatar

Jackie Babiarz

Hi! You can follow Cammy's journey on the Faceboo community page "Cammy Can"! Thank you for asking!!!!

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