Meet Abbey, a nurse and devoted mother from rural Louisiana who cares for her daughter Avery, diagnosed with Lennox-Gastaut syndrome (LGS), a rare and complex form of epilepsy. Since Avery’s first seizures at just a few months old, Abbey has balanced caregiving, treatments, and advocacy with strength and love.
Alongside managing Avery’s health, Abbey shares their journey on her Instagram account - connecting with others and raising awareness. We learned how tools like the Epsy app help her stay informed and organized, as well as the vital role that community and hope play in their lives.
Can you tell us about Avery and her diagnosis?
Avery began having seizures around three or four months old. After many tests and doctor visits, she was diagnosed with Lennox-Gastaut syndrome, a challenging form of epilepsy to manage. We also discovered she has a genetic disorder, which adds another layer to her care.
She’s almost nine now, and over these past eight years, we’ve faced many tough times - but also many special moments. Our focus has always been on helping Avery live her fullest life, whatever that looks like for her.
As a nurse yourself, how has that influenced your approach to Avery’s care?
Being a nurse definitely helps me understand her condition and treatments better, and it means I’m very hands-on with her care. It’s a big responsibility but also empowering. I know how to communicate with doctors, ask the right questions, and advocate for Avery’s needs.
Learn more: 20 seizure questions to ask your doctor
You’ve mentioned using Instagram to share your story. What inspired you to start that?
I started our Instagram to connect with other families going through similar experiences. It’s a way to share our ups and downs honestly, raise awareness about LGS and epilepsy, and build a supportive community. I’m grateful for the many people we’ve reached and the friendships formed.
Check out Abbey’s Instagram @abbeybenj.
How has the Epsy app been part of your journey?
Tracking seizures with the Epsy app is much easier than using a paper diary. Having it on my phone means I don’t forget or lose it, and logging is quick. The app reveals patterns I hadn’t noticed before, which helps my doctor and me adjust medications.
It also helps me feel more in control and less anxious by keeping all info in one place - seizure logs, medication reminders, mood, and triggers. The reminders are great for not missing doses, and tracking triggers helps me prevent seizures. Overall, it’s user-friendly and really supports my epilepsy management.
Can you tell us about managing treatments over the years?
It’s been a roller-coaster. Some days feel stable, then other times her seizures change unexpectedly. We work closely with her care team and communicate immediately when we notice shifts. Some treatments can be adjusted based on how she’s doing, which helps a lot.
My local doctor was helpful, but didn’t have much experience with complex epilepsy. It wasn’t until I went to a specialized epilepsy care center that Avery received the right tests and treatments that truly made a difference. Those centers have the expertise and options local doctors often don’t.
Having options that allow personalization, like adjusting neuromodulation devices or medications to fit Avery’s needs and daily rhythms, has made a real difference. Not every child with epilepsy is the same, so flexibility is key. Avery’s care today includes multiple medications and a vagus nerve stimulator, which together give us more tools to respond to her evolving needs.
Read more: Introduction to epilepsy treatment options
What advice would you give to other parents facing similar challenges?
Don’t be afraid to ask questions and advocate fiercely for your child. Lean on your community and find moments of joy, even if they seem small. You know your child best, and your strength is greater than you think. Focus on quality of life and keep moving forward, one day at a time.
Read our guide to caring for someone with epilepsy
Is there anything else you want people to know about Avery?
I could talk about her forever! Avery is strong, funny, and incredibly resilient. Sharing her story is important to me, and I’m thankful for the chance to do so. I appreciate everyone who takes the time to listen.
A huge thank you to Abbey for sharing her and Avery’s story. If you would like to share your or your loved ones’ epilepsy story, email us at contact@epsyhealth.com.
