By Carol Cheng
This month marks the 14th anniversary of the identification of Loeys-Dietz syndrome. It also marks the 7th anniversary of my daughter Aileen’s death from a ruptured aortic aneurysm at the age of 24.
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By Kate
As a previous Neonatal Intensive Care Nurse when Mo was born in 1995, I longed for a place to connect with others as well as find the most up-to-date information in the care of my daughter.
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By Dr. Hal Dietz
I was initially trained as a pediatrician and a cardiologist. I was quite happy participating in the care of individuals. But simply became frustrated that what we were doing at the time didn’t seem to be making a difference.
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