As many of you know both of my granddaughters were born with Usher Syndrome. What this means is that at birth they were born with moderate-to-severe hearing loss, then when they are a little older they will start losing their sight to retinitis pigmentosa. But they are close to a cure for retinitis pigmentosa but that will take time and money. Please help us out.

Below is the story of my granddaughters written by their mother, my daughter Ruth.

Have you ever imagined what would be like to be both deaf and blind? In My opinion it is something that is hard to even wrap your head around. My children have a very rare genetic disorder called Usher Syndrome. Both of my children were born with moderate-severe hearing loss and will become blind someday due to an eye condition commonly known as retinitis pigmentosa. My daughter Aurora will start losing her eyesight in a few short years and then Aria shortly after that. They will be slowly losing a sense that they depend on more than most due to their hearing impairment. It breaks my heart that both of my children will be struggling through the journey of their life with the extra hurdles that accompany a person that is deaf-blind. The frustrating thing is that there is a very possible cure in the making for this disorder. The only thing standing in it's way is time and money. Please read http://www.wivr.uiowa.edu/UsherChallenge  if you are interested in the specifics of this cure. The Own the Equinox Campaign runs from August 22nd through September 16th to raise awareness about Usher Syndrome. I will be posting pictures, videos, and articles to help raise awareness as part of this campaign. My hope is that many of you can learn from me and share the knowledge that you learn to others so my children could have a greater possibility of not losing their eyesight to this disorder.#ushlookslikethis #usheqx

To donate to help raise awareness go herehttps://www.classy.org/team/128702 
To donate to help find a cure go herehttp://www.wivr.uiowa.edu/ 
To buy a t-shirt go here https://tinyurl.com/y6wxnzyv
To run with us in the Blubber Run go here http://www.pointbockrun.com/blubberrun.html  — withDonna M. Coldwell, Andrew John Heinzl and Jay Coldwell.