BenRusso.com: Article

Monday, March 12, 2012

Article

Saw this article posted on facebook and had to share it. It is really great and puts into words exactly what it is like!

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

1 comment:

Anonymous said...: Amy, I hope that this next week will be an upbeat one for you. I can only imagine what it's like to get nurses to take care of Ben. Knowing how hard it is to find suitable babysitters and daycare for our grandchildren. You just don't want to leave them with just anyone! Hope your Easter is a great one. I'm cooking and the kids will all be here. Tell your Mom hello and that it's her turn to write. :); April 7, 2012 at 10:23 PM

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About CHARGE Syndrome

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.For more information, visit http://www.chargesyndrome.org/

Monday, March 12, 2012

Article

1 comment:

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