BenRusso.com: Celebrating being 8

The highlight of Ben's birthday {for us and Ben} was the smearing of buttercream frosting all over his face. Since he can't eat anything by mouth, this was what he felt was the best use of his birthday cake.

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/

Friday, August 9, 2013

Celebrating being 8

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