Megan Crowley

Pompe Disease

Megan Crowley, Age 23, Princeton, NJ

“My baby girl was three years old. She has her hair in pigtails. She was sitting on the edge of her bed. This was back when she had enough strength to sit up on the edge of the bed. At the time, I was really struggling with trust. Trusting in my business. Trusting the Science. Trusting the financing. Trusting the system. Trusting myself.

I was sitting on the floor next to the bed and reading Megan her Princess book, and said, ‘Megan, you’ve got to be careful, sweetie. You’re too close to the edge, and I don’t want you to fall. But if you do fall, you know that Daddy will catch you.’ Megan just looked down at me. Without saying a word, she smiled, closed her eyes, stretched out her arms, and allowed herself to fall forward. I caught her and held on. Then I asked her why in the world she would do such a thing. With little muscle control and a body whose every system already deeply compromised by the ravages of her disease, a head first fall like that on a hardwood floor could have been disastrous. And then I saw that she was laughing looking me right in the eyes. She knew exactly what she had done. She had fallen on purpose and dared me to catch her.”

– From “Chasing Miracles: The Crowley Family Journey of Strength, Hope and Joy”

At the beginning of her sophomore year of high school in the fall of 2012, her creative writing instructor asked each student to describe themselves in eight words or less. Given the opportunity, Megan chose the words: Little girl who can’t walk but always smiles.

Megan has earned a BA from The University of Notre Dame and is currently pursuing a master’s degree in social work at UNC Chapel Hill.