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I'm very sorry to hear that.

I'm not sure where you're based, but I've heard of Usher's Syndrome after hearing a talk from someone named Molly Watt, who also has Usher's Syndrome. It might be worth dropping her a line, as in her line of work she might be able to either give some advice, or point you towards someone in your situation that can help.

https://www.mollywatt.com/



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