Rett Syndrome Awareness Event

I am Indian, and my husband and I are both faculty at UGA (we moved to Athens, GA two years ago). My 2 year 9 month old daughter was recently diagnosed with the rare devastating neurological disorder, Rett Syndrome. It occurs almost exclusively in girls, and symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common, among others. My baby girl has lost the use of her hands for the most part, and can barely speak anymore, though she remains resolutely bilingual (her first language is Bengali). 

 

In honor of Rett Syndrome Awareness Month (October), I am organizing an event in Athens, GA entitled “This Ability/(Dis)Ability Storytime” at Avid bookshop on Prince Ave on Oct 20, 2018 at 4:00 pm. We are inviting children of all ages (and their parents) to the event. We bring this powerful event to Athens with our proud collaborators: Rett Syndrome Research Trust, Literacies and Children's Literature Program at the College of Education (UGA), Child Development Lab (UGA), reBlossom Mama and Baby Center, and Extra Special People. We are not only hoping to spread the word about Rett, I am also trying to have a larger conversation about disability in Georgia. The event page is here: 

 

 

Many Indians (including some Indian Americans) are affected by it. It’s a disease that brings together the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder in girls, and needs to be eradicated.