By Shena and Trysten Pearson
The month of November is National Epilepsy Awareness Month and it is my pleasure to share our story. Born and raised in Galveston County, I am simply a devoted mother and caretaker to a child with epilepsy. His name is Trysten J. Pearson and he bravely fights every day of his life, be it through the morning with myoclonic seizures and weekly life-threatening tonic-clonic convulsing seizures with hypoxia, that cause him to stop breathing.
Our story of epilepsy begins with his diagnosis, at age 12, in August 2013 while visiting my godparents in Huntsville. After his diagnosis, Trysten found that having epilepsy was not easy to talk about with others, which left him feeling alone and excluded. After spending three weeks in the hospital and being told to hide his condition to keep from being held back in life, Trysten decided it was time to make a difference by raising awareness.
It was time to speak up and tackle epilepsy together in our community!
After a five-year partnership with the Epilepsy Foundation Texas – Houston/Dallas-Fort Worth/West Texas, advocating for the passage of Sam’s Law for Texas Schools, that requires all Texas public school personnel to be trained in seizure first aid, and receiving rank of Eagle with the Boy Scouts of America, Trysten established GCEA to support and improve the quality of life for people with epilepsy.
Gulf Coast Epilepsy Alliance (GCEA) is a 501(c)3 charitable organization that provides direct services to individuals with seizure disorders and those touched by epilepsy in the Gulf Coast areas of Texas.
Our vision is to achieve a society where no person’s life is limited by epilepsy. We have seven strategic aims. We provide referral assistance, individual and family support services, raise awareness of Epilepsy and SUDEP (Sudden Unexpected Death in Epilepsy), serve as advocates for the rights of those with epilepsy, provide community-based training and education to save lives, and support epilepsy research to find a cure while maintaining ethical and best-practice standards.
GCEA is a 100% volunteer based NPO and our Support Group is held online with zoom, every 2nd Thursday of the Month.
To learn more, please visit www.GCEATX.org. Subscribe and connect with us! Shena Daly Pearson is the Executive Director of the Gulf Coast Epilespy Alliance. To contact her, email her at info@gceatx.org
