Caroline Jamie Dennis—aka “CJ”—was born on October 20, 2013. She was a seemingly healthy baby weighing almost 10 pounds! We were so excited to welcome our second child. CJ had her first seizure during her brother’s ice skating lesson when she was four months old. Initially, we hoped it would be a one-time event, however within days we saw another and landed overnight at Lurie Children’s Hospital of Chicago. Our neurologist told us if her arms come up in unison with her head in a jack-knife motion call us immediately. One week later, CJ did exactly that. She was diagnosed with infantile spasms. We were devastated.
It has been an incredible journey and test of faith, but we fight this disease with everything we’ve got. After four years of many, many consults and hospitalizations at Lurie, Mayo Clinic, Toronto SickKids, and the University of Chicago, we are finally beginning to gain seizure control. Infantile spasms has taken its toll on CJ and our family. CJ is significantly developmentally delayed and nonverbal; this summer she was diagnosed as autistic so we could begin applied behavior analysis (ABA) therapy.