“My life was quickly thrown upside down. The love of my life was suddenly killed in a car accident. I handled it with anger and bitterness. The economy began to crumble. I quickly became the best possible cab driver I could be. Shifts were 12 hours long. I pulled my boots up and reinvented myself. Then everything changed again. The ginger ale sat on the kitchen counter, slowly turning into a bomb. At the exact second Shelly passed the sink, the bottle exploded. I was horrified. What a battle it has been.”
‘Up until that point, I’d lived a charmed life. Then tragedy struck. It was isolating. But they also didn’t throw a ‘pity party’ for me.’: Man credits resilience for getting him through ‘each of those dark days’
‘I knew FA was present, but I refused to acknowledge it — to protect my heart and my free spirit.’: After years of denial, woman embraces mobility aid and life with a rare genetic disease
“I never talked about FA with friends, classmates, or professors. I exhausted myself doing so much walking around campus, attempting to keep up and pretend everything was ok. I had tunnel vision; walking on my own was all I cared about… until I had no choice.”
‘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.”
‘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.”
