Our daughter Victoria was diagnosed with epilepsy at just three years old. She is now 11 years old and has been dealing with intractable seizures for almost 8 years.
Victoria has partial focal seizures. She has trialed over 10 different medications to try to get these seizures under control. First there was no known cause for her epilepsy. When she was six, we got a T7 MRi which showed cortical dysplasia in her left frontal lobe, which is the cause of her seizures.
When multiple medications were not enough, we decided to proceed with VNS implant to try to help reduce the number of seizures. Sadly that still did not help. A year after VNS implant we moved forward with a very new and invasive surgery CSCS/DBS- Chronic Subthreshold Cortical Stimulation and Deep Brain stimulation. Victoria had 4 electrodes permanently placed in her brain, connected to a generator in her chest. With two stimulation devices implanted Victoria is STILL fighting daily seizures.
This epilepsy journey has been anything but simple.
What a Cure for Epilepsy Would Mean
A cure for epilepsy would mean so much for Victoria. It would allow independence for her, which she has been unable to have essentially ever. A cure would lift such a heavy burden of fear and pain to her and our family. A cure would mean she would have the opportunity to learn to READ and WRITE like any child should have the opportunity. Thank you so much.