The purpose of this site is to share our experience with CHARGE syndrome. Our daughter Kennedy was born with CHARGE in 1998; as we struggled to understand the future implications of life with CHARGE, we eagerly searched the hospital library for information. We were able to find some medical information, but what we really wanted to see was a "real kid" who had CHARGE. It is our hope that by sharing with other families our story and our amazing daughter, Kennedy, they may have some idea of what life can be like after receiving a diagnosis of CHARGE syndrome. Please click on any of the links below to learn more and do not hesitate to contact us if you have any questions!
See more frequent news, updates, videos, and pictures of Kennedy by visiting her blog.
-Graeme & Lisa
***Please note, this website was created to share our experiences with CHARGE syndrome, it is in no way intended to replace a doctor's advice or care. If you suspect your child has CHARGE syndrome, it is recommended that you seek professional advice from a certified pediatrician and or geneticist.
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