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What is CHARGE???
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
7 comments:
you gotta be kidding me...WOW! WOW! WOW! So much movement and strength, incredible Evan!
And Sarah, the video is perfect with that song...beautiful!
Thanks for sharing! I smiled the entire time!
Amy and Maxwell
Evan -
I love the video! You are one busy guy. Do you go like that all day? My favorite is you climbing on the sofa.
Merry Christmas to you and your super parents.
AMAZING VIDEO! Evan, I am thrilled to see your progress! Way to GO! Keep up the hard work and keep your parents on their toes. I'm proud of you!
Maerry Christmas!!!! ~Kim
Evan, I read you blog all the time, but don't post often. But that video is awesome. You are a young man on a mission.
Hugs,
Carolyn in WV
Look at you go!!! I bet you just crash at the end of the day in that big boy bed of yours. So cute!
Shelly and Luke
That was just adorable and how you closed the door on mom at the end was priceless....LOL!
Great job Evan keep up the great work.
Hugs,
Crystal and Eva
Little Evan, Grandpa showed me the video right before we left the house and didn't have time to leave a comment. My favorite parts of the clever video that mommy put together of you were every little cute thing that you did. I so look forward to the moment you realize that you don't need that chair. Soon, very soon!
Love, Grandma Key
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