brain disease

‘The neurosurgeon apologized profusely, looked me in the eye and said, ‘You were right.’ She was walking all night, screaming bloody murder.’: Mom of chronically ill child urges parents ‘if you feel something is wrong, it probably is’

“During the day, she was completely normal. But at night she would pull out her hair and headbutt her bedroom wall in her sleep, begging me to ‘make it stop.’ She was deteriorating. I had to fight for answers. I had to beg for care for my very complex child. My gut was telling me something was being missed.”

‘I don’t really know what to say. Would you like tea?’ I’d just found out my boy wasn’t fine, he’d never be fine, and our life was forever changed.’: Mom’s son diagnosed with rare Vanishing White Matter terminal illness

“He wasn’t able to walk or stand. He was dragging one of his legs and crisscrossing them. Friends and family kept trying to reassure me everything would be okay, but I knew it wouldn’t. I could tell by how the doctors tiptoed around us, the way they were spending so much time with us. ‘It’s progressive, untreatable, incurable, and terminal.’ Despite all this, Sam is joy personified. He is the most incredible person I’ve ever met.”

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