Turning Grief Into Advocacy

For many years, I believed I was doing everything I could to care for my son, JaCorey. He lived with autism, and what we were repeatedly told was a “seizure disorder.” As his mother and caregiver, I trusted the medical language being used and followed the guidance we were given. What I did not understand until much later was that my son had epilepsy.

For 14 years, the word epilepsy was never clearly used with us. Because of that, I did not know how to ask different questions, seek epilepsy-specific resources, connect with organizations like the Epilepsy Foundation, or pursue care from an epileptologist. I was trying my best with the information I had, but I was making critical decisions from an incomplete understanding of my son’s condition.

One of the hardest truths I live with is that I was also never informed about SUDEP, Sudden Unexpected Death in Epilepsy. No one explained the risks to me in a way that equipped me as a caregiver. I was never told the questions I should be asking or the precautions I should be considering. I now know that information matters. Correct terminology matters. Education matters. And caregiver awareness can be life-saving.

My son’s death from SUDEP changed my life forever. It shattered me, but it also gave me a mission. I cannot change what happened to JaCorey, but I can make sure other families are better informed than I was. I want parents and caregivers to know that loving your child deeply and working hard is not always enough if you are not given the right information. We depend on medical professionals to be truthful, specific, and thorough. When that does not happen, families can be left unknowingly ill-equipped.

Over the last 22 months since my son’s passing, I have turned my grief into advocacy. Through my initiative, The Devoted Mama, I have committed myself to supporting caregivers, sharing resources, and creating spaces where families feel seen, informed, and encouraged. 

I have volunteered in the office and at events with the Epilepsy Foundation in Houston, and I have set up tables at walks and community events to pass out information, support caregivers, and help families learn more about epilepsy and SUDEP. These opportunities have allowed me to connect with other caregivers and serve the community in a meaningful way. The Epilepsy Foundation has helped me by giving me language, community, and a platform for advocacy that I wish I had known about much earlier in my son’s life. It has connected me with families, awareness efforts, and resources that are so important for caregivers. My involvement has strengthened my mission through The Devoted Mama to support families affected by epilepsy, SUDEP, autism, and caregiving challenges.

I have also worked with local lawmakers in Houston to help secure an official proclamation recognizing JaCorey Thomas SUDEP Awareness Day on October 15, 2025. That proclamation is deeply personal to me because it honors my son’s life while helping bring awareness to a subject too many families still do not know enough about.

In addition to my advocacy, I recently published my book, Challenging the Spectrum, which serves as a real-life guide for families navigating autism and epilepsy. I hope that by sharing our story openly, I can help other parents ask better questions, seek specialized care sooner, and understand the importance of education, support, and community.

JaCorey’s life matters. His story matters. And if sharing our journey helps even one family avoid the pain of being uninformed, then his legacy will continue to make a difference. Please ask questions, even the ones that feel uncomfortable. Ask doctors to explain clearly. Ask them to use the correct terminology. Ask about risks, specialists, safety planning, and SUDEP. Do not assume that silence means there is nothing more you need to know. You are your child’s biggest advocate.

To every parent and caregiver: you are not failing because you do not know everything. But you do deserve full information so you can make the best decisions possible for your loved one. Keep advocating, keep learning, and keep using your voice. Your voice may protect someone you love, and it may also help another family feel less alone.

I decided to tell my story because I do not want another caregiver to walk the path I did without the knowledge and support they need. For years, I believed I was providing excellent care for my son and doing everything I knew to do. But I later learned there were critical things I had never been told, including the fact that my son had epilepsy and that SUDEP was a real risk.

That kind of information can change everything. I am sharing our story because families deserve clarity, honesty, and access to the right resources early. I want our story to help other parents know what questions to ask and how important it is to seek specialized care and community support—being misinformed stops with me. The least I can do is be a voice of hope and information.