“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.”
‘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’
‘My son’s tiny body was wracked with seizures. I stroked his tense, shaking face, whispering his name that he was safe.’: Mom says her son is a ‘miracle’ despite debilitating Polymicrogyria diagnosis
“This moment was one I’d never in my 33 years of anxiety imagined happening to me. I held my phone steadily pointed towards my little boy, in hopes of capturing his every move on video. I was witnessing something I’d never have wished on the worst of enemies. I searched ‘Polymicrogyria,’ ran to the toilet, threw up my breakfast and curled into a tight ball. When I tell friends my son has a condition that causes epilepsy, they respond by saying, ‘at least that is treatable.’”
‘I was sent home alone in an Uber in the middle of the night. ‘Just tell me your name!’ I couldn’t remember for the life of me what it was. All I could do was cry. That’s the only thing I remembered how to do.’
“I’ll never forget how I felt. I seemed hungover, except that wasn’t the case. My doctor told me, ‘Have you ever thought that it might be all in your head?’ Everything began to take a turn. I was once the quick-witted friend who always had a joke. Now I was the girl in the back of the classroom, crying because I didn’t know how to be a person anymore.”
‘It was playtime on the playground. My student looked anxious. I climbed to get closer to him, placed my foot on the rail and tumbled, hitting my head on a metal pole. I fell to the ground.’
“That’s it. That’s all it took. Five minutes to change my entire life.”
‘He’s not breathing!’ His entire arm was jerking. What was going on?! ‘He was just screaming! How could he not be breathing?’ Then my phone rang.’
“He was admitted to the hospital ‘just to do some routine stuff’ since he was young for such a high fever. I didn’t love the idea, but I was willing to do whatever was needed. Then something unexpected happened. Trevor started screaming. The nurse reached for the ‘Code Blue’ button on the wall.”
‘I blankly looked at the doctor. ‘What does this mean?’ He replied, ‘Hope you don’t go deaf.’ They gave me a discharge note. ‘I could drop dead at any time.’
“Would you ever think a blood clot could save your life? My phone dinged with a new email from the lab, I nervously signed in and opened the attachment. ‘No way!’ I shouted out loud, was I reading this right?”
‘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.”
‘He looked up at us and then dropped to the ground seizing. This time was different. I thought our nightmare was over, but the universe had other plans.’
“The original doctor who discharged us asked what we were doing back. I wanted to slap him. You’re supposed to shield your child from awful things, not be a participant.”
‘Teachers noticed my 5-year-old making weird movements. ‘It’s all in her head,’ the doctor said.’: Mom demands answers for daughter who has 15 episodes a day of what appears to be seizures, actually is PNKD diagnosis
“Madie continued to have these strange ‘spells’ where her body would paralyze itself. The doctor walked in the room and told me she is making all of this up, and I should take her to a psychiatrist. I made it very clear I was not leaving that room until someone could tell me what was wrong with my daughter.”
‘I woke up being wheeled to the ICU in the worst pain imaginable. All I could silently mouth was ‘How’s my baby?’ I needed a doctor to believe me.’
“I was frustrated and angry. I know my body and I know that this isn’t a migraine!”
