Crazy, amazing, hectic and beautiful. These are the adjectives to describe my life. I am a Pediatric Epilepsy and RARE disease advocate. I am also a wife to an amazing man named Gabe. Our love story is magical. He met my childhood best friend on a Southwest Airlines flight and over the next 6 months they became friends. Then one day while having coffee he described to her his perfect woman, to which she replied, “that’s my best friend, Kristie.” He called me that night. It was a fast courtship. Within a year we were married and pregnant with our first child. We spent 2 years in Washington, D.C. while Gabe worked at the Pentagon. We moved to California when Gabe was called to start a new squadron at Travis Air Force base. After an incredible ride of 20 years of service in the Air Force, Gabe recently retired as a Lieutenant Colonel. Together we have 3 active little kids. Preston (5) is smart with an incredible imagination. Mikayla “Mickie”(4) is our warrior princess and my reason for advocating. Harrison (16 months) is a little wrecking ball. Curious and super fast, he keeps us on our toes.
I never imagined that I would be in the place where God would use me to be a voice for others. Looking back, I wish there had been more people to guide us through the nightmare of our daughter’s epilepsy. After a devastating diagnosis of Infantile Spasms and months of failed drug treatments, our daughter’s seizures continued to come roaring back, wrecking havoc on her development. Ultimately, the only option we had left to preserve the quality of her life was brain surgery. The surgeon removed her parietal, temporal and occipital lobes on the left hemisphere of her brain the day before her first birthday. Three years later, after numerous therapies and countless hospital visits, Mickie is the definition of a miracle. To the best of our knowledge she has been seizure free since her surgery.
Pediatric Epilepsy is catastrophic to the young developing brain. Early diagnosis and intervention are essential and a matter life or death. I advocate that once a child fails any first form of epileptic treatment, they must be seen by a Pediatric Epileptologist. Parents get to trust their instincts and intimate knowledge of their child to speak on their behalf. When the pediatrician, specialists, and neurologists exhaust their medical expertise the child must be referred immediately to a higher level of care at a level 4 epilepsy center.
I do not want other families in similar situations to ever go through this fight alone. Time is of the essence with the developing baby brain. My goal with this blog is to inspire hope, create passion and empower others.