seizures

‘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.”

‘She may never walk again,’ my doctor said. ‘Like hell,’ I thought. I was 17. I’d been in a car accident.’: Single mom overcomes crippling car accident, alcoholism, daughter’s autism diagnosis, says ‘don’t count yourself out’

“I was about to move out, but I found out I was pregnant. I was running on fumes. I felt like I’d made a huge mistake becoming a mom. I wasn’t good at this. I drank to cope. My marriage ended explosively. I finally decided enough was enough when my daughter started copying everything I do. She reached for my beer, and I remember deciding, it was time to be done. For good. That was 8 months ago.”

‘What happened, buddy? What happened?’ I laid down next to him, held his hand. An eerie calm came over me.’: Father pleads ‘hug your kids, don’t work too late’ after regretting ‘missing out on things’ with twin son who suddenly died in his sleep

“The evening before was normal. He was healthy and engaged. We had kids over for dinner. We all jumped on the giant trampoline. He got bossy with the other kids and started telling everyone they were playing the game wrong. I pulled him aside. I was stern with him. Too stern in hindsight. And I made him cry. It’s one of the last interactions we had, and I’ve beaten myself up for it. I can still see the tears rolling down his face. ‘But you’re not listening to me. No one listens to me.’”

‘We begged her to let go. She kept fighting to stay with us. ‘We’ll be together soon. You need to go home,’ we said.’: Mom says daughter suffering from CHD ‘passed peacefully in my arms,’ is ‘finally at peace’

“We went to see Cora for the last time. I washed her hair and gently cleaned her body with a washcloth. I dressed her in our favorite headband and swaddled her tightly. Her sister gave Cora a kiss on her forehead. We told her to say goodbye. ‘Bye bye, Baby Cora.’ My mom took our eldest away so she could pass with my husband and I alone. She was so beautiful, looking at us with such deep love in her eyes.”

‘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.’”

‘My daughter came home from preschool different. She was biting herself. She stopped speaking, sleeping, playing with toys. I could no longer write it off.’ Mom receives Rett Syndrome diagnosis, told it’s ‘one of the most severe cases’

“I get a call from the geneticist. The call drops 3 separate times. The most important call of our life and I miss it. I sit and wait. My phone rings again. He says, ‘Genetics just confirmed Evie has Rett Syndrome.’ He says, ‘There’s no cure. We can’t change it. You can’t do anything.’ My heart sank. This was serious.”

‘As my daughter was giggling, bursting with love in the next room, I was learning she wouldn’t be growing up at all.’ Mom’s 18-month-old daughter diagnosed with ‘Childhood Alzheimer’s’

“The phone rang. I grabbed a notepad, a pen, took a deep breath. How do you prepare yourself to answer a call with the results of whether your 18-month-old daughter is going to die? My mind shut off. All the air left the room. ‘Very serious, no cure yet, not sure, lots of research.'”

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