Welcome to our 2017 VisionWalk Website, one of the most important things we do all year.
We found out that Riya had Usher Syndrome, Type IIa when she was about 6months old and since then have been trying to do all we can to support her and the research that we believe will lead to a cure for Usher Syndrome. Those with Usher Syndrome are born with varying degrees of hearing impairment, and lose their vision throughout their lives. Those with Usher Syndrome II typically lose their vision starting in the second decade of life, beginning with the loss of peripheral and night vision. Some become completely blind and some retain some amount of central vision.
When we first got Riya's diagnosis, her ophthalmologist said he thought it was "unnecessarily pessimistic" to believe that there wouldn't be a cure within Riya's lifetime. I thought it was just his line, but as I have learned more about the amazing research that is being done, I now believe that indeed a cure is possible. I am hopeful that it will come in time for Riya and she will not have to lose much vision, or perhaps none at all.
All that we know to do to help her is protect her eyes from sunlight and smoke, and raise money for research. If you are able to make a donation towards this research, we would be incredibly grateful.
With lots of love,
Riya, Sonia, Thara and Josh