At the age of 14, Lisa began experiencing the first symptoms of epilepsy. At 16, due to the severity and frequency of her seizures, she was placed in a coma. When she awoke, she was hemiplegic. The diagnosis then came: Rasmussen’s encephalitis.
I will not dwell on the hell she went through. How could it be otherwise when, one morning, you see all your dreams as a young girl disappear?
For loved ones, the suffering is immense; that feeling of helplessness is unbearable.
Because her epilepsy was resistant to medication, the seizures continued, although they became less severe. Hospitalizations and rehabilitation stays followed one after another.
At the beginning of 2025, surgery was deemed necessary. A hemispherotomy was performed last July.
Although the seizures have stopped, Lisa has lost the ability to speak and can now say only a few words. She has entered another kind of hell: aphasia, compounded by right-sided hemiplegia. No longer being able to express herself, no longer being able to make herself understood… The distress we see on her face when, despite all our efforts, we cannot understand what she is trying to say is a source of immense suffering.
Aphasia is an invisible disability that remains far too little known and that profoundly isolates those who live with it. If this testimony can help raise awareness of this reality and support other families, then it will have served its purpose.
Roland Gagneux, Lisa’s grandfather