infantile spasms

‘Call 911!’ My baby was twitching. I held his limp body. I heard sirens. They were coming for MY child.’: Boy suffering from Childhood Epilepsy undergoes brain surgery, ‘he is now happy and living with half a brain’

“We were getting ready for a nice picnic at the park. Suddenly, the right side of his body went stiff. His oxygen dropped. First firefighters, then paramedics. Our house was full of first responders. ‘Why is nothing working?!’ I wanted to wake up from this nightmare. I wanted him to live. I held my breath.”

‘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.”

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