Katie is a sweet, happy 9-year-old who was born with CHARGE Syndrome, a rare genetic condition that affects hearing, sight, balance, feeding, sleep, the heart, and many other functions. Katie has had 10 surgeries to date, as well as countless doctor and therapy visits. She continues to amaze us with her fun-loving personality, determination, and progress. We hope you enjoy our stories here. Feel free to post comments--we enjoy hearing from everyone!
Hi. My daughter Joanna has CHARGE too. She just turned 19 years old at the end of April 2011.She is scheduled to graduate from H.S. in 2012. Last year she participated in her school graduation cremony by reciting the Pledge of Allegiance before thousands of people. She was grinning ear to ear and is not the least bit shy. I let her have a Facebook account but limit her use to when we are together at the Public Library. She used to have constant sinus infections and usually took long doses of Antibiotics which really didn't seem to help much. She used to cough very loudly and constantly which was disruptive in her classes and in public places. She had her tonsils removed a few years ago and to me it was miraculous the changes it made. Her sleep apnea also went from hundreds of stops to only around 15 a night.She is a great gal and loves everybody. She would love to see you someday. Trouble is we are way up north here in Vermont. It is beautiful here today after way too much rain lately. Hope you get better soon.
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Hi. My daughter Joanna has CHARGE too. She just turned 19 years old at the end of April 2011.She is scheduled to graduate from H.S. in 2012. Last year she participated in her school graduation cremony by reciting the Pledge of Allegiance before thousands of people. She was grinning ear to ear and is not the least bit shy. I let her have a Facebook account but limit her use to when we are together at the Public Library. She used to have constant sinus infections and usually took long doses of Antibiotics which really didn't seem to help much. She used to cough very loudly and constantly which was disruptive in her classes and in public places. She had her tonsils removed a few years ago and to me it was miraculous the changes it made. Her sleep apnea also went from hundreds of stops to only around 15 a night.She is a great gal and loves everybody. She would love to see you someday. Trouble is we are way up north here in Vermont. It is beautiful here today after way too much rain lately. Hope you get better soon.
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