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‘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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