My Nonprofit Reviews
Review for Chromosome Disorder Outreach, Inc., Boca Raton, FL, USA
Three years ago I got a phone call from the geneticist's office. I was told that our daughter Diana has a rare chromosome deletion that is associated with major abnormalities of the body, as well as overall developmental delays. Like many mothers who are confronted with such news, I fell to the floor screaming. I felt so alone. Nobody I knew was in a situation like ours. Additionally, Diana's deletion was not presenting itself in the same way as others who have her deletion, so we had no blueprint for her development.
When I found this group I also found people like me, going through similar experiences. From discussing practical and medical issues (which diapers are best for larger children) to emotional issues (how do we react when people mock our children) we have a place to go. Additionally, with more research and awareness, we hope to improve the lives of our children. We want all the good things for our children that all parents want.
Picture -Diana and her Daddy when he returned from deployment
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