The Journey
My husband Tim and I were blessed with our son, Joe, who was born with neonatal Marfan Syndrome. His courage and determination inspire us every day, as he continues to embrace new experiences despite physical challenges.
As parents, we encourage Joe to put himself out there. But often, peers respond with stares - intense and uncomfortable. At first, we didn't know how to handle it. That's when I discovered a new mission: to write a book about staring. Not only to educate children, but also to guide parents in helping their kids respond with kindness instead of silence.
Telling children "don't stare" often teaches them not to engage. But engagement is powerful. A simple "hello" or compliment can make someone feel seen and valued. We've found that encouraging kids to ask respectful questions helps everyone. Once their curiosity is addressed - why someone wears leg braces or uses a wheelchair - the staring usually stops and connections are made.
Through open dialogue and empathy, we can build a more inclusive and compassionate world. We hope Joe's story inspires others to choose understanding over silence and kindness over discomfort.
About Susie
Before transitioning to her role as an author and advocate, Susie Doyle spent 15 years as a registered nurse in the oncology department at the University of Chicago Medical Center. She is married and has 3 beautiful children.
Her debut children's book, “I'm So Glad You Asked!” was inspired by her eldest son, Joe, who was diagnosed with neonatal Marfan syndrome at five months old. Merging her clinical expertise with a mother's love, Susie is on a mission to bridge the gap between curiosity and connection. She writes to encourage open dialogue, proving that while physical differences exist, we are all just people who deserve kindness over silence.
Susie is a member of the Marfan Foundation and serves on the committee for the HeartWorks Gala in Chicago. She remains committed to educating others on Marfan awareness, driven by the belief that knowing the signs can save lives.