Here we open up the stories of the families within the support group and beyond. Contained herein there are accounts that will strike you as almost implausible, such is the extent to which the families were stretched, and stories that will strike the saddest notes in your heart. Every person with CHARGE has a different experience of the condition


Our Journey with Orla

By Steven Baker
3/7/2016 2:26:16 PM

Anna and Steve knew nothing about CHARGE syndrome before their daughter, Orla, was born. An advanced scan detected a unilateral cleft lip, but there was nothing else to be concerned about. However, after Orla's birth they entered a world they describe as confusing, terrifying and despairing. As time passed, however, they found the world of CHARGE to be full of fascination and interest. They tell their story here.

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