As Infantile Spams Awareness Week approaches, I am reminded of some very special people whose stories have been imprinted on my heart and fuel our mission to educate parents, medical professionals and legislators on the devastating effects seizures have on the developing brain of a child. I think about baby Dani and her mother, Val, every single day.
When Mickie was admitted to CHOC Children’s Hospital at 11 months old I asked to be connected to other families facing Infantile Spasms (IS). Val and I began sharing our journey over text message. Our girls were the same age, diagnosed with IS and we were holding on for dear life to save them. Dani and Mickie continued to seize uncontrollably, failing one anti-seizure medication after another.
When we found out Mickie had a focal point on her brain that enabled her to have life-saving brain surgery, Val shared with me their MRI failed to find a focal point and therefore surgery was not an option. My heart sank. Dani was now having 100s and 100s of seizures a day and they were running out of options. As Mickie went from surviving to thriving, Dani’s health deteriorated. And then the unthinkable. On March 10, 2016, Dani passed away. IS caused so many complications that it cost this little warrior her life. Her parents have created a beautiful garden in her memory where butterflies, hummingbirds and bunnies come to visit.
We memorialize Dani here as one of Mickie’s Angels. She is a daily reminder of why our effort in advocacy and education is so critical. Next week, I will be traveling to Washington D.C. to share a parent’s perspective on the effects of IS with the Congressional Neuro-Science Caucus. Please stay connected with us as we share more stories, research and inspiration on the fight against pediatric epilepsy.
P.S. Every day I struggle with feelings of guilt over why our daughter was spared when more than one third of kiddos die from IS. Until my last breath, I will speak up for these angels who no longer can.