Alexa’s journey to a Seizure-Free Life

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Alexa’s journey to a Seizure-Free Life

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Our daughter Alexa Rose was born with Cortical Dysplasia. Her Tonic-Clonic (grand mal) Seizures didn’t start to get really bad until she was two years old. Phoenix Children’s Hospital is/has become her second home. Her Neurologist Dr. Korwyn Willams has gotten to know Alexa very well as we see him every 3 months since she was two years old. He has been wonderful and given us a lot of knowledge into Epilepsy. We’ve done many things to keep Alexa’s seizures under control. We have tried Doterra Oils, the Keto Diet, cutting out Sugar. Alexa has also tried many seizure medications: Keppra, Trileptal, Oxcarbazepine, Clobazam, Cenobamate, Clonazapam, Xcopri Titration. Her resistance to medication causes her to be a Very HIGH Risk to SUDEP since her seizure control is not obtained!. Dr. Korwyn Williams referred Alexa case to Dr. Jason Hauptman who reviewed her case and advised that the next step is Left Frontal Lobectomy to give Alexa a 50-60% chance of seizure freedom. Alexa’s damage tissue is around her language and motor skills. So it’s a risky surgery but our goal as her parents is to try and prolong our daughters’ life as much as possible. Hopefully with the Brain Surgery we can obtained seizure FREEDOM. It’s going to be a long road ahead but our daughter Alexa Rose is a strong WARRIOR. She deserves a chance at a normal life. “Alexa Rose wants no more stinkn seizures!” So we’re asking for help to pay for her upcoming brain surgery. Our portion to pay PCH is just too much on our family especially with her high medication cost that we still continue to pay for and her recents procedures it has taken a toll on us financially.

Please Help Alexa Rose fight Cortical Dysplasia!

Organizer

Circe Repenning
Organizer
Florence, AZ
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