by Elina (Anna’s Sister) (Highland Park, IL).
My sister Anna Miller was born in the Former Soviet Union in 1988. She was diagnosed with Dupq15 after genetic testing was conducted shortly after our arrival in the United States in 1989 to identify the cause of Anna’s developmental delays. Anna suffered from low muscle tone in her legs and we were told she wouldn’t be able to walk. Doctors were not sure what her capabilities would be. Not only did Anna defy expectations and walk but she was able to run (she especially liked to run across busy streets and away from us at various department stores.) Her favorite subject in school was gym where she would run on a track no matter what activity the teacher proposed for that day. The only thing she refused to be was potty trained. At age eight, Anna started experiencing seizures which we desperately tried to control with medication. She enjoyed watching endless episodes of Barney and Friends, Lamb Chop’s Playalong and Kidsongs. She had an extensive collection of cassette tapes that she would spend hours organizing. She was an early adopter of YouTube and would watch her favorite shows on the computer, monopolizing the time. The was always and forever Anna’s turn.
She loved dancing, looking at herself lovingly and much too long in the mirror and gave many hugs to family and strangers. She was a fan of kisses and would turn her cheek and expect one but would never reciprocate. She loved going out into the community and enjoyed shopping and especially paying for things at the register where she would loudly proclaim, “I love money!" She loved Lipton tea with sugar, Cool Ranch Doritos, fried potatoes, borscht and avocado with abandon. When Anna was 19, we were able to place her in a group home through Glenkirk. At 22, Anna graduated Highland
Park High School were she was well known after having attended for eight years. Later that year, her seizures worsened and became uncontrollable no matter how much medication was administered. While we were researching options on how to control them, Anna passed away in her sleep during the throes of a seizure. She left behind my mom Susanna, dad Igor, brother Michael and myself, our lives a little dimmer, with less flavor. She took with that unconditional love that she bestowed upon all of us. It was the greatest gift of all despite the many challenges that we faced because of her. We donated Anna’s brain to the Autism Tissue program where they determined that the seizures had caused permanent damage to her brain and death was an inevitable outcome. We were glad not to have known.