Race for Landry

“We are living our worst fear. Most people’s worst fear – that something terrible would happen to your child. That you would have to watch helplessly as they suffer. That their life would be hard and filled with pain. That they would struggle to do tasks we take for granted every day. We have been facing these fears since one morning last April when our daughter, Landry, presented with seizure-like symptoms. Five weeks later we heard the words: Alternating Hemiplegia of Childhood and our world was forever changed. I spent the coming days and nights reading every research article I could find with those words in it. Initial denial began to subside, the more I learned the more devastating these words became. This wasn’t going away. It was worse than we had imagined. There is no treatment. There is no cure. Landry is 17 months old now and she loves to read books, swing, and give kisses. She loves splashing in the bath and making messes at mealtime. She is mostly sweet with just enough sass to make her fun. Without warning our lives stop and AHC steals our little girl; steals her ability to move, to eat, to babble, to laugh. Every time it does we hold her and pray that it will not steal her life.That’s where we live – where no one wants to. Where we are constantly watching Landry’s eyes for signs of impending episodes and pray that this won’t be the one that causes permanent and irrevocable damage. Where we constantly balance pushing Landry for her development with avoiding episodes. Where we are constantly in a race against time and AHC for our daughter’s life. We feel a strong conviction to do whatever we can for Landry, for His glory, to reach a cure. Healing, this side of heaven, is an actual possibility through gene therapy. A research movement led by desperate parent organizations to save our children’s lives. This is a race, this is time sensitive. Race with us FOR LANDRY.”Join the Race to END AHC; race with us to give Landry hope.ahckids.org/race#steps4ahc#ENDAHC#forlandry