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CHD-HLHS Survivor: Born with Half A Heart
Multi-Abuse & Medical Trauma Survivor
Health & Empowerment Coach:
Trauma Recovery Specialist
Social Activist: Disability & Child Rights
Born with Complex Congenital Heart Disease, Stephanie Romer is one of the oldest people in the world living with half a heart, called Hypoplastic Left Heart Syndrome, HLHS: an often terminal heart condition.
Her story takes you through the first fourteen years of her life as she fights to survive-combating the relentless ticking time bomb in her chest and unwavering war on her mind. In the midst of ongoing abuse and medical traumas, she becomes hypervigilant of saving everyone but herself. Battling undiagnosed ADHD, debilitating anxiety, depression, and black-out rage, she questions authority and fights for control of her own body by taking life into her own hands. Tick...Tick...Tick...
*skip to 3:00 mins in for the Announcement!
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Currently booking events for 2024!
Writing, Speaking, & other collaborations inquire below.
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WHAT READERS ARE SAYING:
"Stephanie articulately and eloquently, and at times very humorously, describes the dynamic and parallels of growing up in and out of the hospital while simultaneously dealing with various forms of abuse. I found her writing riveting, enthralling, heartbreaking, and I couldn’t put it down."
"This is such a well written book about living with a chronic illness while dealing with things no child should ever have to experience. Her story is heart wrenching, but her bravery is admirable. I laughed and cried throughout this book. Would recommend to anyone!"
GALLERY
"I thought doctors were so cool and I loved their outfits! Doctors were heroes to me, whose coats were capes, and stethoscopes a tool for their magic powers.
I felt special that I had so many doctor friends.
I looked up to them and wanted to be a doctor one day so I could wear their silly slippers and fancy white coat."
-Stephanie Romer, Quieting The Clock: The Baby
Pic on Top Left: Pre-Fontan Party, 1989 | Pic on Top Right: Post-Fontan, 1990
"At six years old, I was getting stronger, with minimal side effects so far…so I decided I wanted to be more active like my brother, cousins, and peers and try another year of t-ball."
-Stephanie Romer, Quieting The Clock: Too Sick To Love
"But I was determined to set my own limits. My parents and doctor had no idea that I’d just beaten every kid in gym class by being the fastest to climb a giant rope all the way to the ceiling. I was in the midst of figuring out my strength and abilities, as well as cardio limits. And now, the perfect opportunity was coming up: the Math-A-Thon Jump Rope Competition."
-Stephanie Romer, Quieting The Clock : Purple Jump Rope
“I have nothing to lose—might as well do some good while I’m around! That was my motto in life. I didn’t care who you were: what size, age, or title you had. I wasn’t scared of you. No punishment could have been worse than death’s shadow constantly at my back, and Clip’s sick fantasies acted out on me.
Since I couldn’t save myself, I would use my suppressed rage to save everyone else."
-Stephanie Romer, Quieting The Clock: Standing Up
"I was still in modeling school and continuing local runway shows and competitions. Walking around with books on my head and Vaseline on my teeth to prepare for classes and shows was always funny to me. I was also still playing softball and in my sixth, and final, year of ballet, tap, and jazz. I no longer wanted to be a cheerleader and joined the church choir instead because I didn’t understand why children were put in short skirts..."
-Stephanie Romer, Quieting The Clock: Taste of Freedom
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