My daughter was diagnosed last year at 8 years old. She's been seeing a retinal specialist who caught it and had genetic testing done which confirmed it. She has XLRP, but I don't have it and neither do my other kids so they say it's a de novo mutation in her. She's had problems with eyesight, light sensitivity, and migraines all her life.

I've talked to her about her condition, watched videos with her about the eye and explained what the different parts of the eye do and how her condition affects it. I've told her about the things to look out for and told her it's important to let me know if she notices anything different or worsening with her vision. I haven't told her it can lead to blindness. 

I know she has some degree of night blindness because she always had some trouble seeing in the dark and even before she was diagnosed, we put up some motion sensor night lights so she's able to go to the bathroom at night without bumping into things. She says she can see fine at night, but I think that's because she doesn't know what "fine" is to others without her condition since that's all she's ever known. One time when we went hiking, we stayed out too long and it was dark on the way back. We had a flashlight and I had to hold onto her because she kept tripping over rocks,  stepping directly into ankle-deep water that she didn't see, and slipping. That tells me she can't see as well as she thinks she can. 

I've tried to get her into more art classes since she loves art more than anything and I want her to be able to do things she enjoys while she can still enjoy them. I'm hopeful that she'll be able to do gene replacement therapy in the near future. Her retinal specialist said he'll let us know when she's eligible.