‘I looked straight at my husband. ‘Why isn’t he crying?’ He was like a wet sponge. Within seconds, he coded blue.’: Mom births baby with centronuclear myopathy, ‘I will do everything in my power to give him a full, happy life’

“My husband gripped my hand firmly and hugged me. ‘Please take care of our boy. Do anything you need to make sure he’s going to be ok.’ I reached out to hold his little hand. He couldn’t even grip it. His eyes were unable to open. He couldn’t close his mouth. He just lay there. The geneticist told us, ‘These types of cases very rarely live to see their 6-month birthday.’ He then shook my hand and left. I was in literaly hell.”

‘I’m worried about him getting this surgery. He doesn’t need to do this.’ I remember them telling me, ‘Just focus on your breathing,’ as they put the mask on me, and I was put to sleep.’

“The doctors said to my mother, ‘It’s time for you to say your goodbyes, there is really nothing else we could do.’ Up until this point, my mom had always been on top of the plans, making sure things were done perfectly. But now in the chaos, she was disorganized and unsure of everything. Then, a miracle happened.”

‘There is smoke all around me. A bright flash followed by debris rushing past my face. A pitched ringing in my ears. My mouth is moving, but no sound is coming out.’

“The smell of burning flesh is in the air. My helmet chin strap is inside my mouth and being forced down my throat. In a state of panic, I pull at it and choke violently. All my senses are in shock. In an attempt to escape my impending fate, I notice all movement is restricted by an unseen force. Then, I wake up.”

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