While looking through baby name books several months before our bundle of joy was to arrive, one name stuck out among all the others, Karley. There are a few different interpretations as to the meaning of her name, but made the decision based on the definition in our name book; womanly and strength. We envisioned bringing another vivacious, intelligent, beautiful little girl into this world that will do great things for others and herself in her time on earth. Looking back, we are convinced that choosing Karley as her name is no coincidence; the Lord knows what he’s doing. Even though it may appear that we’ve been punished, we trust that the Lord has placed this burden on Karley and our family for a reason. We do not fully understand why yet and we may not for some time, but someday his plan for her will be unveiled. Karley is strong-willed and determined which helps her to achieve her full potential as a person. We will be there for her every step of the way and through our faith, unwavering love and support from family and friends, and the determination that’s in her DNA, she will beat the odds and conquer her diagnosis of Dravet Syndrome.
The early days of Karley’s diagnosis were rough. She started having seizures at 3 months of age. The doctors did not call them seizures at first. We spent many many days in and out of the hospital. I did a lot of research online and came across an epilepsy support group. As I described Karley’s seizures and all the other aspects of what was going on, and a Dravet mom responded and told me that it sounded like Dravet Syndrome and we should ask for genetic testing. So after another status seizure and a hospital stay we demanded it be done. Karley was diagnosed at 13 months. That was the hardest year of our lives. The emotional toll of this diagnosis was unbearable for each of us, including our extended family. We are very blessed to have such a loving caring family to help us through.
Our hope for Karley is she continues to strive and prosper each day. We would love to have better seizure control and hopefully one day a cure for her and all the other kids who suffer daily. We strive to make this happen by being active in the Dravet Syndrome Foundation by raising funds for research.
Our advice to newly diagnosed families is to take it day by day. Celebrate the good days and lean on one another on the bad. You are never alone. You can always turn to the DSF support group which played a big part in our story. Finding local Dravet families is also very helpful. Don’t be afraid to ask questions and never ever lose HOPE!