seizures

‘The monitor went crazy. Suddenly, there was a half dozen doctors in the room, bagging my son. ‘I’m going to watch him die, aren’t I?’: Boy diagnosed with rare Sturge-Weber Syndrome, ‘A birthmark changed our life’

“He was hitting his milestones. He was happy. He was supposed to beat the odds. One evening, we noticed he wasn’t himself. He wasn’t making eye contact and was whimpering non-stop. We thought it was the heat, so we gave him a cool bath and went to sleep. The next morning, his face turned blue before my eyes. He went limp. The ambulance came and took Noah away. I couldn’t believe it. My baby wasn’t my baby anymore. Watching him fight made me so strong. For him. For us.”

‘The nurse kept asking, ‘Are you ready to take her off life support?’ She knelt down with her stethoscope and confirmed she was gone.’: Mom loses 3 babies to kidney disease, ‘We love harder and hug tighter’

“My entire future was dark. How was I going to keep living when my baby died? We were always waiting to find out if our baby would die and now we were waiting to find out if we’d have a baby that would live. That moment was when the world stood still. We were pregnant for the fourth time.”

‘Is she breathing right now?’ She was limp, almost lifeless. I watched in fear as they loaded my tiny 1-month old baby girl into the ambulance.’: Baby is born with rare chromosomal deletion, ‘We basically won the lottery with her.’

“Hattie had been born with a significant deletion of her first chromosome. We had no idea what this all meant. Hattie was one in a billion. We received a plethora of mail. ‘Dear parent or guardian of a child with special needs.’ Special needs? Hattie doesn’t have special needs, does she? As far as we knew, Hattie seemed completely normal to us! We have learned to avoid the CAN’Ts and focus on all the CANs.”

‘I’m having a hard time finding the baby’s head,’ the doctor said. ‘Were you bit by a mosquito during pregnancy?’: Mom births miracle baby with microcephaly, ‘He brings us endless joy!’

“I went for my routine check-up with my OB. The vibe of the room felt off. My doctor asked, ‘Have you been out of the country while pregnant?’ So many questions went through my head all at once. Is my baby alive? Is he okay? How’s his head? How many fingers and toes does he have? I was already in love with him, but so scared. And then I felt it. ‘This baby isn’t going anywhere.'”

‘After my C-section, I heard, ‘Wow! He’s got a big birthmark on his face.’: Baby is born with Port-Wine Stain and Sturge-Weber Syndrome, ‘Never did I think I would have to consider what anti-seizure medication would best keep my child thriving.’

“A bright reddish-purple color covered more than half of my newborn son’s face. ‘Will this birthmark fade? Will it get worse? What will other people think? Can this lead to other health issues?’ Looking back now, those first months of Leo’s life, I was living in fear. I was consumed by anxiety, exhaustion, and confusion.”

‘I can’t tell my dad, please, you have to.’ I couldn’t say the words. ‘Sometimes we don’t all make it to the end.’: Young woman survives cancer 3 times, says she is ‘finally living her full life’

“My husband held me as I cried and said, ‘I just don’t know if I can do it all again.’ I took a minute to figure out if it was the path I wanted to take. I was so exhausted, I didn’t know what would happen nor was I in a state to even TRY. I dug deep and knew in my heart I had to fight again. I was not going to let my family down by giving up.”

‘I noticed a strange package. It was the exact same coat. No one knew where it came from. All they could tell me was it was a male.’: Woman receives package from mystery sender in thoughtful anonymous act of kindness

“I had a Grand-Mal Seizure. I was completely unresponsive. They had to cut my clothes as a life-saving measure. I understood why, but seeing everything cut to pieces shattered me. I sobbed. As soon as I got home, I ordered another jacket. Then I noticed a strange package. It was my coat, the same style, size, color. No one had any clue what I was talking about. I want to find out who did this for me.”

‘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.”

‘Why, my baby, why!’ Our boy was suffering. I never thought I’d have to make a decision like this.’: Mom urges life can ‘change drastically in minutes’ after infant son dies from heart attack, SIDS, bronchial pneumonia

“After 12 long hours, we decided to let him go. We got him Baptized and got his finger and hand prints before the doctor came in and said it was time. She put him in a little quilt and put him into my mom’s arms. Yes, my mom’s. I couldn’t hold him at that point, I was a coward.”

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