1. 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.

2. The Impact of Deafblindness

Of the five senses, vision and hearing are the primary senses through which we collect information:

* as much as 80% of what we learn is learned visually, and,

* hearing is the basis of the communication/ language system that most people use.

When these two two major channels for receiving information are impaired or not functioning, it has far reaching effects on a child’s development in several areas:

• communication/language development
• movement & motor development
• cognitive development & the ability to learn
• emotional/social development
• body image & self concept

Individuals who are deafblind need early intervention and personal attention to stimulate their understanding and interest in the world around them. The information that most children pick-up naturally must be deliberately introduced to children with dual sensory impairment.