September 6, 2023
Sotos Syndrome Awareness Day: The Schoch’s Story
By Cheryl Schoch

September 6th is Sotos Syndrome Awareness Day — and like with many rare genetic disorders, Jumo Health is committed to raising awareness and providing accessible education. I have seen the countless benefits of what bringing a deeper understanding to families and caregivers of those with Sotos Syndrome can truly do. 

In our home, the bonds of love and care are woven deeply with unending support. As a big sister to my incredible brother, Thomas, and the daughter of a dedicated nurse, every day has been a unique journey filled with medical challenges, encouragement, and triumphant moments.

My mother, a beacon of strength, cares so compassionately for others in her role as a nurse. Yet, her dedication extends far beyond the hospital walls — it’s a cornerstone of our family’s foundation. Growing up, I witnessed her juggle her demanding profession while ensuring that Thomas received the specialized care he needed due to his Sotos Syndrome. From administering medications to managing appointments, my mother’s expertise and love created an environment where Thomas could thrive despite his challenges.

In this backdrop of caregiving, my role as a big sister took on a special dimension. I became more than just a sibling; I became a partner in our family’s journey, supporting my mother and inspiring Thomas to reach for his dreams. Together, we embarked on a remarkable adventure with the Special Olympics. Since starting that journey in 2010, our family has been actively involved in fostering athletes with a wide range of abilities, championing inclusivity and celebrating the unique strengths each individual brings. 

As Thomas navigated the unique terrain of Sotos Syndrome, the Special Olympics became a pool of empowerment. I vividly remember the first time he dipped into the water, determination radiating from every stroke. With each training session, I stood by the poolside, cheering him on through every lap — both in the water and in life. The smile that broke across his face as he touched the wall was a testament to his unwavering spirit and the boundless potential that resides within us all.

As I look back on my brother’s journey — a path filled with challenges, triumphs, and endless love — I’m reminded of the profound impact that we have on each other’s lives. My mother’s unwavering care, Thomas’s indomitable spirit, and my role as a big sister have converged in a way that I hope inspires others who are navigating the challenges of Sotos Syndrome.

Joining the incredible team at Jumo Health has been a transformative journey that has reignited my fervor for fostering understanding and compassion. As someone who has personally navigated the complexities of caring for a loved one with Sotos Syndrome, I’ve always held a deep-seated passion for increasing knowledge and recognition of rare conditions like these. Working at Jumo Health has provided me with a platform to amplify my voice and make a genuine impact. Every day, I get to contribute to the completion of educational resources that empower families, individuals, and communities to embrace differences and navigate the challenges with empathy. It’s as if my experiences as an older sister have found a purposeful home, and I’m fueled by the opportunity to inspire positive change.

Cheryl Schoch

Jumo Health develops age-appropriate, culturally relevant, and relatable educational resources for patients and caregivers. We have experience serving diverse populations, covering more than 160 health topics across 80+ countries in 120+ languages. Our various digital, video, and print offerings use highly visual elements and research-backed health literacy strategies to ensure that everyone can understand and act upon complex medical information. We do this through familiar mediums – from comic books and animation, to virtual reality experiences and authentic documentary-style patient stories – all customized based on audience. Jumo Health collaborates globally with more than 180 advocacy groups and community organizations to promote access and to ensure unique patient experiences are accurately represented.

It looks like you're using an outdated browser. Please upgrade your browser for the best experience.