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Helping Henry See and Hear

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SOURCE Help Henry See and Hear

Congenital Deafblindness is Robbing 6-year-old of Sight and Sound

PHILADELPHIA, May 5, 2014 /PRNewswire-USNewswire/ -- Parents' worst nightmares are that something is wrong with their children. In the case of Henry Norton, his parents, Kim and Philip, knew from birth he was deaf but at age 5 Henry started losing his vision.

Henry, age 6, has Usher Syndrome which is hereditary deaf-blindness. Here he is on an Orientation and Mobility lesson in Medford, NJ. Learning to use a cane is a skill and O&M is essential as his vision is closing on a 5 degree visual field. Henry uses his bi-lateral Cochlear Implants to hear for noise in the environment. A Dual-sensory loss such as with Usher Syndrome can be extremely isolating without the proper intervention and supports.

Henry has Usher Syndrome Type 2c: hereditary deafblindness. Usher Syndrome is rare, but Type 2c is rarer still. It has been characterized by deafness and typical sight at birth with a rapid degeneration of the retina (Retinitis Pigmentosa) before age 10. In Henry's case, at 5-years-old he had 180 degrees of vision and at 6-years-old he has 10 degrees to 15 degrees of vision remaining. He is expected to lose another 5 degrees before stabilizing. That's panoramic sight compared with looking through a straw.

Although Henry has bilateral Cochlear Implants, which bypass the cilia in the ears to stimulate the auditory nerve directly to access sound, American Sign Language is Henry's first language. The Nortons are not sitting idly by as their youngest son loses his primary access to communication. They've teamed up with local doctors at The Children's Hospital of Philadelphia, specifically, Bart Leroy, MD, PhD, to understand what Henry is up against. The optic nerve is much more intricate than the auditory nerve and the research is just not there yet to bypass the retina, Dr. Leroy explained to the family in March.

Help Henry See and Hear is a driving force in the Norton family. Raising awareness of and money for Usher Syndrome research may one day save Henry's vision. Casey Eye Institute in Portland, Oregon has ongoing research that could salvage Henry's vision in a few years, Leroy explained.

For now, Help Henry See and Hear is preparing for their 2nd annual Family Event at the Flying W on July 20.  All proceeds will go directly to funding Usher Syndrome research.

Help Henry See and Hear is a New Jersey non-profit* that supports individuals and families affected by Usher Syndrome. It supports research, provides information, support and social opportunities for those who are deaf and blind due to Usher Syndrome. *501(c)(3) application has been submitted and we are awaiting our tax-exempt status.

Contact: Kim Norton
Telephone: 856-425-8026
E-mail: Kim@HelpHenrySeeandHear.org
Web site: www.HelpHenrySeeandHear.org

Photo - http://photos.prnewswire.com/prnh/20140504/83963

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