Sarah Jane Smith was born with no complications on April 10, 2001. She was a healthy baby with no sign of problems until she began having seizures at 5 months old. She was diagnosed with Epilepsy, and despite the best efforts of her parents and doctors, her Epilepsy proved to be intractable. Sarah was put on many different medications, and also tried the ketogenic diet, but unfortunately never had seizure control for more than a few months at a time.
Twenty-four of Sarah's seizures were "status epilepticus" which are prolonged and potentially life threatening. She has had over 50 ambulance rides to the ER in her lifetime. Despite all of her challenges, her development was nearly on track for her age, and the minor delays she did have were due to her many hospitalizations and medications. She received therapy through the Missouri First Steps program, and the experts expected her to catch up in all areas by kindergarten.
Then on Sunday morning, March 28, 2004, right before her third birthday, Sarah Jane and her family's lives changed forever. That morning, while at Cardinal Glennon Children's Hospital, she suffered a rare 5 hour seizure (the 24th status seizure) from which she was not expected to survive. She was in a coma on life support for 28 days, and was hospitalized for nearly 4 months. When we brought her home that July, she was totally blind, could not move her body, could not swallow her own saliva, could not hold up her head, had no facial expressions, and could not communicate.
Sarah has come a long way since then, small step by small step. She now attends school 5 days a week, and does additional therapies such as Lite Gait and Hippotherapy (horseback therapy). She is now holding her head up quite well, eating pureed food by mouth when she is well, hitting switches to activate toys and to communicate, taking steps in the Lite Gait trainer, sitting up by herself with a little help, seeing well enough to identify objects by gaze, smiling, laughing, crying, and vocalizing. She loves music and responds to it by singing along, smiling and laughing. Sarah is still having seizures every day, but currently they are not life threatening.
In November of 2007, at age 6 ½, Sarah was finally diagnosed with a rare genetic epilepsy - Dravet's Syndrome. She has a variation in her SCN1A gene, which most likely was not inherited, but happened spontaneously.
Because she is so young, and because she has already surpassed the prognoses she was given, we have every reason to believe that more of her abilities will continue to re-emerge. We are always learning about and trying new ways to help her progress. Our biggest hope is that she is enjoying her life, and we think she truly is.
Sarah Jane is the little sister of Matt, who lives in Milwaukee with his wife Laura, and the big sister of Graham, born 1-28-06.
We are very thankful for our family, our dear friends, and the many doctors, therapists, nurses, caregivers, and angels who have been there for us.
Thank you very much for visiting,
Dave and Sandy Smith