Both Ben and Colin have Usher syndrome. The boys' latest eye tests show that their vision is worse than ever. Ben's retinitis is such that he now officially qualifies as "deaf-blind" in the state school system. He's almost completely night-blind and has lost much of his peripheral vision. Colin is trending the same way, but his condition is not nearly as advanced as Ben's. In January Ben's school teacher & specialists will begin teaching him to use "the cane" in case he loses his eyesight sooner than normal (between ages 15-20). Colin will learn the cane with Ben, so they can at least do it together. The odds are about 50-50 that he'll lose his eyesight completely.We always knew it could happen. It's just happening sooner than normal... by about a decade.
Ben's such a good boy... and a strong, tough one, too. We're grateful to family & friends for well-wishes, thoughts & prayers.
2 comments:
How old are your boys? I have a 10 year old daughter with Usher Syndrome 1. She has only lost her night vision and perpherial vision so far. We have not started cane training yet.
The boys just turned six. Needless to say, this is an extremely rare development.
Thanks for your concern. Good luck with your daughter!
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