glycerol kinase deficiency - any mom out there?
My son was diagnosed with glycerol kinase deficiency. There isn’t much information out there and we have our appointment with a specialist in a few weeks, I want to know if there is another mom out there that we might connect. Is such a rare disorder this might be a long shot but thought I’d try! -we’ve been told he doesn’t have the infant form but rather the adult form which I feel there is even less info and so many questions as a mom.
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