SMA

My son Roman never cries. He is paralyzed, but he has the heart of a lion. So when he called tonight, just moments ago, sobbing uncontrollably, I could not recognize the voice.
For parents, participants and museum staff seeing Szot’s work for the first time, the experience was eye-opening. Just playing
One evening last November, just before Thanksgiving, we gathered around the television in Owen's room, a knot of shared DNA
I learned at a very young age that life is a precious gift, and living in a life of fear will only hold me back from chasing my dreams. This is the life I've been given, and I can promise you I'm always going to make the most of it.
We are a family shaped by Jordan. We honor that by remembering him, by telling his story. And, like Avery's family, we also remember that we are part of a community of families.
He also shared a letter -- written (like the rest of the blog) in Avery's voice -- in which she asked one more time for people
Avery Canahuati has never gone swimming or worn a Halloween costume, but she has received her first kiss. She is just 5 months