I’ll never forget that first seizure. I turned around to find my sweet baby – who just seconds before was happily playing on the floor – folded in half, jerking, and turning blue. That was the first of countless seizures.
For our family, this month’s intention is deeply personal. Our ten-year-old daughter Anna suffers from Dravet Syndrome, a rare, severe, and lifelong form of epilepsy. Her first seizures began when she was just six months old, setting us on a road marked by deep uncertainty, but also by astonishing grace and love.
Dravet Syndrome is more than just seizures. It touches nearly every part of daily life. Anna has developed more slowly than her peers, deals with restricted mobility, and struggles with limited communication. Even her body temperature and sleep are affected.
Children like Anna require constant care and vigilance. Yet through every challenge, Anna radiates joy, courage, and peace. She is a light to everyone she meets. Next to the sacraments, Anna is the greatest source of grace for our family. Through the gift of Anna, we have learned so much: patience, compassion, and the strength that comes from surrendering everything to God. In short, Anna has taught us the way of trust and love.
As we join Pope Leo in prayer this month, may we hold all children with incurable diseases close to our hearts. May we honor their dignity, uplift their families, and allow their lives to remind us that every person—no matter their abilities—is willed, loved, and necessary; each one reveals something sacred about the heart of God.