Lydia's Story

Lydia Fiesel was born on October 26, 2002, as a “failure to thrive” baby. She didn’t gain weight at first, and we found out that she had grade 3 reflux and aspiration. Not a big deal. At 5 months old, I saw her first seizure. She was having myoclonic seizures. Her whole body would jerk in spasms anywhere from 30-90 seconds. They seemed to happen most when she would wake up from sleep. So of course, waking her up was the worst part of my day. She continued to lose weight during this time, and we tried Keppra, which didn’t seem to help with the seizures. At 8 months old, she got a feeding tube to help with weight gain. A week after her surgery, her seizures stopped. Her last seizure was on July 18, 2003. She is now taking Topamax for the seizures and is finally on the charts for weight. Her EEGs show that she has “spikes,” potential for seizures, but for now, the storm is calm. Lydia has since been diagnosed with cerebral palsy. She uses a wheelchair and a walker. She is non-verbal, but her smiles warm my heart. She is the light of my life!