What the Research Didn’t Tell Me About My Daughter’s Rare Disorder


Dear Aicardi Syndrome,

When I found out that you were part of our lives via our beautiful baby girl, I read everything I could find about you. It was not uplifting information.

The medical literature said that with you in our lives, we could not expect our daughter to live beyond early childhood. It did not say that 22 years later, I would sit with her across from a neurologist who is beaming because my daughter is still alive.

It said there would be significant developmental delays, but not that she would thrive in spite of them.

It said that there would be uncontrollable lifelong seizures, but didn’t mention that these seizures would cause us to bond with parents from all over the world. In fact, we would find some of our best friends through parent groups, and they would remind us how to laugh.

The reports said that she would have visual deficits, but there was no mention of how, despite being legally blind in one eye and having less than perfect vision in the other, she would love looking out the window as we drove. There was no description of how intently she would look at us when we read her a story, or the way she would gaze into our eyes with trust and love.

The information I read was old. It mentioned some with Aicardi were sent to live in institutions and that she would likely not be able to walk. It didn’t say that we would find ways to care for her at home and give her mobility with a wheelchair.

That terrifying information I read about you never said our daughter would share many of the same life experiences as her older sister, and would join the Scouts, win gold medals in bowling, join clubs and be in Christmas pageants and concerts. It didn’t tell us how she’d love going to parties and dances, or enjoy Sponge Bob, funny videos, being outside, riding the school bus and going to the mall.

It didn’t mention that she would light up when she hears her father’s voice, lean against me when she isn’t feeling well or tease her sister. I didn’t read anything about how she would touch the lives of all who meet her and be popular among her peers. It didn’t hint that without the ability to speak she would still find a way to effectively communicate her feelings.

There was nothing about how we would accept you as part of her, and go days without even thinking your name. In short, Aicardi Syndrome, the literature about you didn’t tell the whole story. Because even with all the challenges you brought here, life for and with our daughter is as full and joyful as anybody’s could be.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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