Peter Alexander tells TODAY that sister Rebecca has Usher Syndrome. What is Usher syndrome? Usher Syndrome, writes Peter for Today’s blog, is “robbing her of her vision and her hearing all at once.”

Rebecca is a grown beautiful, hardworking, and seemingly healthy woman from the report. Peter describes her as “smart, kind and hysterically funny”. But yet, Peter says doctors tell his sister that she will go completely blind and deaf by the end of the decade.

Says Rebecca:

“It’s like I am slowly being taken from the world around me — like the end of an old Warner Brothers cartoon on TV where the picture becomes an increasingly smaller hole until it finally fades to black.”

What is this horrible syndrome? Medicinenet.com describes Usher as the following:

Usher syndrome is the most common condition that affects both hearing and vision. A syndrome is a disease or disorder that has more than one feature or symptom. The major symptoms of Usher syndrome are hearing loss and an eye disorder called retinitis pigmentosa, or RP. RP causes night-blindness and a loss of peripheral vision (side vision) through the progressive degeneration of the retina. The retina is a light-sensitive tissue at the back of the eye and is crucial for vision. As RP progresses, the field of vision narrows – a condition known as “tunnel vision” – until only central vision (the ability to see straight ahead) remains. Many people with Usher syndrome also have severe balance problems.

It says there are three types of Usher Syndrome – 1, 2 and 3.

In the United States, types 1 and 2 are the most common types. Together, they account for approximately 90 to 95 percent of all cases of children who have Usher syndrome.

For more on Rebecca’s story in Peter’s own words, click here