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Emma Lutz is an eleven-year-old who radiates creativity and confidence. She builds elaborate Lego worlds, bakes with her听mom听and fills every room with warmth. But just a year ago, her family feared they might never see this version of her again.听
Emma鈥檚 first seizure happened suddenly. At school, she froze in the hallway and听诲颈诲苍鈥檛听respond for half a minute. A week later, she had a seizure in her sleep. Soon, seizures became a regular part of her life, making her feel lost and confused.听
Her mother, Trisha, watched Emma pull away from the things she loved. 鈥淪he 诲颈诲苍鈥檛 trust herself anymore,鈥 Trisha says.听Emma started to seize听almost every听day, and her favorite activities like roller skating and swimming became scary.听
Her father, Andrew, recalls the helplessness they felt. 鈥淭he hardest part was not knowing where her life was going to go. We kept asking ourselves, 鈥業s she ever going to get back to normal?鈥 We tried medication after medication, hoping each time that this would be the one. But nothing changed. We felt like we were losing her.鈥听
Emma鈥檚 family first found hope in听She Danced with Lightning, a book that tells the story of a child with epilepsy treated at听NewYork-Presbyterian/Weill Cornell Medical Center. Seeking a second opinion, Emma鈥檚 parents connected with听that child鈥檚 epilepsy team,听pediatric neurologist听Dr. Zachary听Grinspan听and pediatric neurosurgeon听Dr. Caitlin Hoffman.听
Dr. Hoffman remembers meeting Emma, who 鈥渨as bright,听brave听and deeply thoughtful. Even in her fear, she asked smart questions. Our goal was to give her a life not defined by seizures and she had the strength to walk that path.鈥听
The pediatric epilepsy team, coordinated by Michelle Buontempo NP,听quickly became a lifeline, helping Emma feel calmer and answering all of her family鈥檚 questions.听Dr. H. Allison Bender,听a neuropsychologist at听AV研究所 Neurological Surgery听and epilepsy specialist, helped explain how Emma鈥檚 seizures affect her cognitive function, memory, language and learning,听and听defined听how surgery听could positively听impact these abilities听by controlling her seizures.听
As part of Emma鈥檚 evaluation, the team conducted advanced diagnostic testing, including prolonged video EEG monitoring, high-resolution MRI, neuropsychological testing,听and functional imaging, to precisely map where Emma鈥檚 seizures were originating and how critical听brain functions like language and memory were organized. This level of detailed testing allowed the team to confidently听determine听both the seizure focus and the safest surgical approach.听
Surprisingly, EEGs showed Emma鈥檚 seizures came from the left side of her brain, not the right, as听previous听evaluations had听thought. Her brain鈥檚 right side had been compensating, picking up the slack.听
For Emma's parents, deciding to move forward with brain surgery was agonizing. The procedure would involve repairing a skull defect and performing a selective resection (amygdala-hippocampectomy) to remove the seizure focus.听
鈥淗earing the words听鈥brain surgery鈥听for your ten-year-old is incomprehensible,鈥 Trisha says.听
What听ultimately gave听Emma鈥檚 family confidence was the surgical team and their approach. Dr. Hoffman听took听time to explain each step of the procedure and how the team worked together to keep Emma safe. The clarity, coordination and compassion of the pediatric epilepsy surgery team helped Emma鈥檚 parents feel supported and secure in their decision.听
After surgery, Emma woke up alert and talking. Her parents were so relieved to see signs of improvement.听
Emma鈥檚 recovery听飞补蝉苍鈥檛听easy but within days, something shifted.听
鈥淗er attitude went back to what it was before the seizures,鈥 Andrew says. 鈥淪he was more engaged, more herself. We got our daughter back.鈥听
Emma remembers feeling 鈥渓ike I could finally do things again. I听飞补蝉苍鈥檛听scared anymore.鈥听
Today, Emma is thriving and making new friends. She swims without fear and goes on zipline courses. After surgery, Emma laughs more and trusts her body again.听
鈥淭his is the longest she鈥檚 ever gone without a seizure,鈥 Andrew says. 鈥淓very milestone feels like a miracle.鈥听
Emma鈥檚 family now sees life differently. Their message to other families facing pediatric epilepsy surgery is simple and powerful: 鈥滨迟鈥檚听scary, but it can change everything. Trust the professionals.听顿辞苍鈥檛听give up hope.鈥听
Emma鈥檚 journey is a testament to what鈥檚 possible when expert care meets extraordinary courage. Dr. Hoffman听explains:听鈥淓mma reminds us why we do this work. She is living proof that there is always hope.鈥听
For families ready to take the next step, the experts in pediatric epilepsy surgery at AV研究所 can help guide you through diagnosis and treatment planning. .
