Man with Usher Syndrome shares story of hope

Posted at 5:31 PM, Sep 21, 2018
and last updated 2018-09-21 18:37:40-04

Saturday morning non-profit “Ush One See” will hold a race in Lafayette to benefit people with Usher Syndrome.  The condition causes people to become both deaf and increasingly blind throughout their lives.

One man living with the condition says he wants the story of the deaf-blind community to be heard.

Dan Arabie has been deaf since birth, so he always knew he was different. It wasn’t until his teens when he realized the extent of his condition.

“I began to see the differences in my vision. Then I went to the doctor and found out I was diagnosed with Ushers syndrome,” says Arabie.

Ushers syndrome affects primarily people of Acadian descent. It starts with profound hearing loss and leads to the loss of vision too.

“Being deaf and blind makes it a lot harder. You feel like you’re in the darkness and in a silent world,” says Arabie, who communicates with his daughter, Kirsten Hanks, through tactile signing. He says it’s also ok for somebody else to try and communicate by spelling letters on his hand.

“They just want to know that they can do anything a normal, hearing, sighted person can do,” says Hanks.

With advanced technology and determination, Arabie has been able to work jobs, earn a college degree, get married and raise four girls, and while Usher Syndrome patients wait on a cure, he believes his story can offer hope.

“I’m hoping we’ll see improvements in the future and that people who have ushers syndrome won’t be alone and that they can get out and have a normal life like people who can see and hear,” says Arabie.

The race benefiting Usher Syndrome research will be Saturday in the River Ranch town square with a 10K at 7 and a 5K at 8.