epilepsy

‘It looked like she was doing a stomach crunch. Both arms and legs came together in the air. This went on for hours.’: Mother thrilled to have her ‘happy baby back’ after Infantile Spasms diagnosis

“We first noticed a weird movement when she was 5 months. Doctors said, ‘It’s just gas. Change her to soy milk,’ and, ‘It’ll pass.’ It wasn’t until her dad decided to search ‘spasms,’ that we began to gain insight into this nightmare. Something in me snapped. She was using our daughter for her own research. ‘I’m so sorry baby,’ her dad always said. Through all this, Salma has never shown signs of giving up.”

‘She looked like Cinderella, but lives like Sleeping Beauty. We feel guilty for fussing at her, but we had no clue.’: 16-year-old sleeps ‘more than 20 hours a day’ in comas due to severe epilepsy

“People have said she is ‘too pretty’ to be as sick as she is. They simply don’t believe us. This has even happened with doctors because she is dressed nicely and, if she’s well enough for me to prop her up, then I’ll put her makeup on. Her brain misfires more than 80% of her life. She’s been hospitalized hundreds of times, has stopped breathing, her heart has stopped and she’s had to be resuscitated.”

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