Joey at 2 days old.
This is the story of our son, written by his father, who was diagnosed with a trisomy 17 disorder at the age of 4 months, on January 9th 2012. At the time that he was diagnosed there was very little information online, and only a few first hand accounts of how this disease had affected a child, so I wanted to share our experience so that it might help other parents that find their children in a similar situation.
Tuesday, January 15, 2013
How common is it?
It seems like Trisomy 17 may be more common than I first reported. Apparently there are different forms of the disorder. I think that numbers I cited before (7-50 known cases) was probably for specific forms of the disease. My friend pointed me to a Wikipedia page that says that one specific form, Potocki-Lupski syndrome affects 1 in 20,000. Still a pretty rare disease, but not nearly as rare as what I first reported.
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