Joanna’s life is shaped by caregiving, advocacy, and the many ways communication can look different from child to child.
As the parent of 13‑year‑old Avant, who lives with epilepsy and communicates through ASL and technology, Joanna works every day to build understanding and create inclusive spaces for families like hers.
For Joanna, caregiving has reshaped every part of her life and deepened her understanding of epilepsy.
“Being his caregiver has taught me how complex epilepsy can be—not only medically, but emotionally and socially.”
A central part of Joanna’s experience as a caregiver has been learning how to support Avant’s communication.
“Avant’s communication has been one of the most meaningful parts of our journey,” she says.
“Incorporating ASL and a communication device gave him ways to express himself and strengthened our connection.”
Sharing the Story of their Journey
That understanding eventually led to Epilepsy in Sign, a storytelling platform where Joanna and Avant invite others into their family’s journey. Using sign, expression, technology, and imagery, Joanna and Avant show what navigating epilepsy looks like when communication takes many forms.
“Creating Epilepsy in Sign was a turning point for me,” Joanna says. “It allowed me to transform our experiences into advocacy and education.”
There are more than 40 different types of seizures, and the impacts of epilepsy can vary from person to person. Joanna hopes that this platform can helps others see just how varied epilepsy can be.
“Seizures vary, and epilepsy can affect communication, independence, and daily life in ways that aren’t always visible.”
A Reminder: You are Not Alone
More than anything, Joanna wants caregivers walking a similar path to know they are not alone.
“Families often carry responsibilities that go unseen,” she says. “Patience, empathy, and accessibility can make a powerful difference.”
At the same time, sharing their story has helped her find connections in return. Receiving support from other caregivers, advocates, and organizations has also helped remind her that she is not alone.
Through their platform, they continue to center visibility, inclusion, and understanding. All in an effort to highlight the different experiences of individuals and families navigating epilepsy.
“For me, it is about honoring children like Avant, supporting caregivers, and continuing to advocate for accessible, compassionate communities.”