Fearfully, Wondrously Made: The Story About CHARGE

Learn about CHARGE Syndrome. Background music by Glenn Kaiser, Fearfully, Wondrously Made, used by permission of Grrr Records. More info about CHARGE at http://www.chargesyndrome.org

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Nonprofits & Activism

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• CHARGE
• Glenn Kaiser

[pgonzma1]

in 1996 my baby was born with charge syndrom. the doctors told us she would never have a real life. we did everthing we could. the doctors advise us to just give up. we did. she died two weeks later. a year later almost to the date i had a beutiful healthy girl. she is my life. but i still feel the sorrow 14 years later.

[planetmikedotcom]

@pgonzma1 I'm sorry for what you went through. I can't imagine that.

[TheAlanna88]

my daughter is 1wk old and was told she has charge syndrome..she cant see or hear and because of how her brain is she will not be able to talk eat breath on her own she will have no REAL life..the doctors say...

[planetmikedotcom]

@TheAlanna88 Do not believe everything you are told right now, and please don't get discouraged. Contact the CHARGE Syndrome Foundation and get some info about this. Be aware you aren't alone in this. Yes, it will be challenging. Our niece Emily is now 4 1/2 years old (8 months old when I made this video), attending pre-school, walking, starting to talk and use some sign language.

[coraraz]

I have a child who was recently diagnosed with CHARGE Syndrome a little over a year ago. He is 7 & 1/2 now. For so many years we had no clue on what he's condition was called or anything. I've always called it multiple congenital birth defects. But its nice to that we aren't alone. And if you truly LOVE your child you would do anything even move heaven and earth. Don't let ANYONE tell you any less.