CDG

‘The neurologist called. ‘I’m 90% sure your son has Congenital Disorder of Glycosylation. Do not google it.’: Special needs mom urges, ‘Life can be beautiful, even when it doesn’t go as planned’

“Christopher is 7 years old and cannot sit on his own without falling over. He can’t walk and uses a wheelchair. He hasn’t had food orally for over 5 years, and is fed with a GJ tube. He has never told me he loves me, or said a single word. And I have learned that even without words, his story is going to be a beautiful one.”

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