While looking through our baby name books several months before our bundle of joy was to arrive, one name stuck out among the others - Karley.

There are a few different interpretations as to the meaning of her name, but we 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 would 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 is doing. Even though it may appear that we've been punished, we trust 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 one day His plan for her will be unveiled.

Karley will have to be strong-willed and determined to overcome her life-long ailment and still achieve her full potential as a person. We will be there for her every step of the way and through our faith, unwavering support of friends and family, and the determination that's in her DNA, she will beat the odds and conquer her diagnosis of Dravet syndrome.

To date, Karley has had a really rough year and a half. Her seizures increased drastically. It almost felt like we were at the very beginning of our journey again. She was having multiple status (30 min) seizures daily. We were treating her daily with all the rescue medications we had on hand.  We knew we had to make some changes with medications so we went in-patient for a 48 hour video EGG as we couldn’t pin point the exact type of seizures she was having. They would start out as a myoclonic, then turn Tonic Clonic and then absent, with some strange looking ones that we were unsure of. Within less of 12 hours admitted, Karley preformed multiple times and they were able to catch the information from the EGG that we needed. The plan was to start back on Depakote and wean two of the medications that she was on that we knew weren’t working. Since starting Depakote, Karley has had just a hand full of seizures and a better quality of life. She has been the happiest that we’ve seen in a very long time. Karley is also on a drug trial at Cook Children’s Medical Center. We have very high hopes for this study drug to help give her the seizure freedom that we strive for.