The thought of a surgeon cutting into your child’s brain is enough to send any parent spiraling. Tawny McAnally knows the feeling all too well. Her daughter, Morgan Layton, was diagnosed at age 13 with intractable epilepsy, a neurological disorder causing seizures that cannot be managed using medication.
Morgan’s rare form of epilepsy causes 16 types of seizures up to 200 times per day. In March 2019, after searching for an effective treatment for three years, doctors referred Morgan to Manish N. Shah, MD, a faculty member of UTHealth Neurosciences who surgically removed part of her brain to help mitigate her most severe seizures. Nine months later, Shah performed a procedure to implant a vagus nerve stimulator, a device that acts like a pacemaker for Morgan’s brain by sending pulses of electrical energy to prevent seizures.
“We came to Dr. Shah feeling defeated, but he gave us hope,” says Tawny. “We may not be able to cure Morgan’s epilepsy, but with Dr. Shah’s help, we are finding ways to manage her seizures.”
Aside from Morgan’s family and specialists like Shah, people often cannot recognize when she is seizing and needs aid. Wanting to help others recognize different types of seizures and know how to respond, Morgan came up with the idea to create a foundation.
In December 2019, Tawny helped Morgan turn her vision into reality, and the family started the Rare Epilepsy Education Foundation.
“Our goal is to teach caregivers, schools, first responders, and others in the community about rare forms of epilepsy and connect families who are going through similar experiences,” says Tawny, who serves as chair of the foundation. “Additionally, we plan to distribute annual awards to researchers for groundbreaking work in epilepsy and other brain disorders.”
In December 2020, the foundation presented its first Innovation and Treatment of Brain Disorders Award to Shah for his team’s work on Cap-based Transcranial Optical Tomography (CTOT)—an award unlike any other because it brought together many of Shah’s current and former patients.
Tawny searched on social media for other families whose lives Shah has touched—including Aries’ mother, Aisha—and invited them to join a special videoconference award presentation. Each family watched from home while Shah received a commemorative plaque and cards they had signed with special notes of gratitude.
“This is the most meaningful award I may ever receive,” says Shah. “Sometimes, I wonder if my patients know how much I think of them, but this award truly shows how much they think of me. I feel so honored to be part of each of their lives.”
Shah collaborates with faculty from The Brown Foundation Institute of Molecular Medicine for the Prevention of Human Diseases at McGovern Medical School at UTHealth: Eva M. Sevick, PhD, oversees device development, and Banghe Zhu, PhD, is the lead biomedical optical engineer.
“CTOT has the potential to revolutionize the way doctors image the brains of young children, which may help detect brain disorders like epilepsy earlier and lead to better treatments,” says Tawny. “We hope this award inspires Dr. Shah and his team to continue driving innovation.”
As the team refines CTOT to scan faster and more accurately, philanthropic support can help them expand testing to bring the device closer to making an impact for more children and their families.