Woman already profoundly deaf now losing vision, too

ST. LOUIS -- Megan Kennedy was born profoundly deaf, and is gradually going blind, too. Rather than fret about the future, she is embracing the present.

"I can be in the moment and be really happy where I'm at," Kennedy said. "There are beautiful things that come out of that -- just learning how great it is right now."

Kennedy, 30, of St. Louis, has an 80 percent hearing loss, and has lost her peripheral vision. She sees just 10 percent of what's in front of her.

She was a student at the University of Kansas eight years ago when she learned she was going blind. That's when she learned she has Usher syndrome, a genetic disorder that causes varying degrees of deafness and blindness, she told the St. Louis Post-Dispatch.

"When you are told you are going blind, all those things you thought you were going to be come into question," Kennedy said. "Am I going to be able to do what I wanted to do?"

In 2008, Kennedy and her mother, Terry Cacciatore, started the Megan Foundation to help others with the syndrome. At the fifth annual fundraiser on Valentine's Day, more than $100,000 is expected to be raised.

Kennedy said there have been plenty of difficult times since her diagnosis, but plenty of uplifting days, too. Often, when she felt particularly crushed, she would get a call, a note or a visit that lifted her.

More than 400,000 people worldwide have Usher syndrome, including 50,000 in the U.S. It is a disorder that involves multiple mutations that result in varying degrees and rates of hearing and vision loss.

The vision loss is due to the degeneration of the retina. Hearing loss is caused by damage to nerve cells found in the cochlea, the transmitting structure in the inner ear.

Dr. Rajendra Apte, a retina expert at Washington University School of Medicine who cares for Kennedy, said there is no treatment now for Usher syndrome, but medications to slow its progression could be ready for testing in five years.

Apte acknowledges that dread can be as difficult to deal with as the worsening physical limitations.

"It's like having an 800-pound gorilla on your head, where you're thinking the whole time, 'Where am I going to be 10 years from now?"' he said.