Our middle daughter was born with congenital CMV (Cytomegalovirus), a common virus most people have never heard of. The virus attacked her brain while she was developing in utero, leading to hundreds of seizures daily. At just 19 months old, she underwent a right functional hemispherectomy. Today, she has a very low seizure burden and is stable, vivacious, and loving life!

Raising a child on the epilepsy surgery journey is difficult and isolating. One thing that helped me along the way was the support and kindness of other epilepsy surgery families. I’ll never forget the kindness of two families who visited us while my daughter was in surgery. Their children, who had recently undergone hemispherectomy, were full of life and hope. Their presence reminded me that we weren’t alone and helped me through one of my darkest hours.

I always share with others that this journey is a marathon. New and surprising twists and turns come along the way. In many ways, the surgery is just the beginning and not the end. Ongoing medical, therapeutic, educational, and emotional challenges arise. This is a testament to the importance of a peer support program. We are long-haulers, and we need to lift each other up!

Being a Parent Support Navigator has brought me more joy than I can describe. I feel a deep sense of purpose when speaking to families going through similar situations that we endured, and it ensures me that our journey was not in vain. It took me many years to feel ready to give this type of support. I appreciate The Pediatric Epilepsy Surgery Alliance for allowing me the chance to serve as a Parent Support Navigator.

Languages spoken: English