My 18 month old has ushers, we're dealing with the hearing loss but I'm dreading the day when we have to tell him about his eyes. We've got a few years to go before that day, at a loss to when/how that's going to happen.
I too have a child with Ushers (1F). We told him at age 10, though obviously it didn't really register until some years later. Please feel free to reach out to me.
Thank you, I will take you up on that offer at some stage.
If I were you I would begin experimenting with gene replacement therapy. It seems like a straightforward fix in the case of Usher’s. In the worst case scenario there are things you can try in your own garage.
My limited understanding is that the gene involved is very large and therefore difficult to use in traditional gene therapy, though I have obviously very limited knowledge in this.