Our story shares our family’s journey after our six-year-old daughter, Janessa, was diagnosed with focal epilepsy following her first seizure. We describe how epilepsy—particularly dangerous nighttime seizures—has changed our daily lives, reshaped our sense of safety, and introduced fear and uncertainty into something as simple as sleep. Through medication challenges, emotional struggles, and constant vigilance, we also highlight Janessa’s resilience and our family’s determination to advocate for her care. By sharing our experience, we hope to raise awareness about pediatric epilepsy, the risks of nocturnal seizures, and the importance of comprehensive support systems that help children feel safe, supported, and empowered.
Our Why
We are sharing our daughter Janessa’s epilepsy story to raise awareness, give a voice to children living with epilepsy, and help other families who may feel frightened or alone—especially those navigating the uncertainty of nighttime seizures. Epilepsy changed our family overnight, and if our story can educate, comfort, or help another child sleep more safely, then sharing it matters.
The Beginning: Diagnosis and Early Experiences
Our journey began on October 27, when our six-year-old daughter, Janessa, experienced her first seizure. What started as a normal day quickly turned into one of the most terrifying moments of our lives. She was rushed to Texas Children’s Hospital, and suddenly we were introduced to a world we never expected to enter.
After extensive testing, Janessa was diagnosed with epilepsy. Her EEG showed frequent abnormal electrical activity, particularly during deep sleep. We learned that her seizures originate in the right posterior temporal and occipital regions of her brain—and that nighttime is the most dangerous time for her.
How Epilepsy Affects Daily Life
Epilepsy has changed how Janessa—and our entire family—lives day to day. Sleep, something most families take for granted, has become a source of fear. Janessa no longer feels safe sleeping alone, and we must closely monitor her at night because her seizures are hardest to detect while she is asleep.
Medication side effects have also impacted her mood and emotional regulation, making some days more challenging than others. Activities that once felt simple now require planning, supervision, and constant awareness to ensure her safety.
Struggles and Strength
There have been incredibly difficult moments—watching seizures last longer than 10 minutes, administering rescue medication, and feeling powerless while waiting for them to end. As parents, those moments are etched into us forever.
At the same time, Janessa has shown remarkable strength. Despite fear and uncertainty, she continues to smile, learn, and love deeply. Her resilience inspires us every day.
The Emotional Journey
Along with epilepsy came fear, anxiety, and a deep sense of uncertainty. Janessa developed anxiety around bedtime and separation, often asking if she will be safe when she sleeps. As parents, we carry the constant weight of vigilance, especially during the night.
Epilepsy doesn’t just affect the body—it affects emotions, confidence, and a child’s sense of security.
Support Systems
Our support system has been essential. Janessa’s medical team, counselors, family, friends, and epilepsy organizations have helped us navigate this journey. Counseling has played an important role in helping Janessa cope emotionally with her diagnosis and fear around sleep.
Community support reminds us that we are not alone—and that no family should have to face epilepsy in isolation.
Treatments and Management
Janessa is under the care of a pediatric neurologist and follows a comprehensive treatment plan. She is currently transitioning medications after experiencing adverse reactions to two anti-seizure medications.
She also has a detailed Seizure Action Plan in place, which has been critical for her safety. While medication helps, it has not eliminated the risks—especially at night.
Educating Others About Epilepsy
Epilepsy is not just “having seizures.” It is unpredictable, complex, and deeply personal. Many people don’t realize that seizures can happen during sleep, last many minutes, or require emergency medication. For children like Janessa, epilepsy affects independence, emotional well-being, and daily routines.
Raising awareness helps combat misinformation and fosters understanding, compassion, and advocacy.
Hope and a Call to Action
Despite the challenges, we hold onto hope. We are pursuing a trained epilepsy service dog as an additional safety measure to help detect seizures, alert caregivers, and provide reassurance—especially at night when Janessa is most vulnerable.
No child should be afraid to fall asleep.
By sharing Janessa’s story, we hope to encourage awareness, understanding, and action beyond our family. Epilepsy deserves attention, research, and support—because every child deserves to feel safe.