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There’s only about 100 cases of HUWE1-related neurodevelopmental disorder recorded in history. Avery’s specific variant was the only one recorded so far, ever, and I’m a carrier for it. This genetic disorder exists on the spectrum, with Avery’s on the severe end. It’s a common misconception that genetic testing in pregnancy rules out all genetic syndromes. #medicallycomplex #infantloss #grief #babytok #griefjourney