I'm sorry your family is going through this. Stay strong for your DD.
My boss was diagnosed with this very early in her childhood. She is now 60 nowhere near blind, she does wear glasses like so many others. I remember going in her office and her telling me about her conditin while she was cleaning her glasses. I think Dr.s these days have to tell us the worst of something but doesn't necessarily mean it will happen. I'm sure you are doing this now but educate yourself as much as possible and find THE BEST doctors for this condition and deal with it the best you can for DD's sake. WIshing your family all the best
I am so sorry to hear this... BUT I want to give you some hope. My cousin was diagnosed with retinitis pigmentosa when he was a little boy. He did gradually lose his eyesight but not to the point that he is completely blind. He is considered "legally blind" but he can still see KWIM?
During his early childhood and teenage years he required a great deal of help with his studies since he had trouble reading and focusing his eyesight. Well, today, at the age of 38 he is happily married and a couple of years ago he became a doctor. He obtained a PhD in Sociology and became a very known professor and author of many sociology books!
Its going to be a long road and your daughter will need a lot of help and dedication from you. But I can assure you that she will thrive and will grow up in a normal life and will go on and lead a normal, fulfilling adult life!
ETA: I also wanted to add that it is genetic and my grandmother was recently diagnosed with it as well. But she didn't start losing her eyesight until recently. She will be 73 next week and she is doing just fine.
I'm so sorry that your family member was so inconsiderate to have spread something like this among your family when it is none of their business. Some people just have no common sense and should be ashamed of themselves.
I hope that they will be able to help her keep her eyesight.
I am so sorry that you are going through this. I can't imagine the pain. It is baffling to me how some people think they have the right to intrude on another persons personal business ... ESPECIALLY when someone clearly states that they HAVE NOT discussed this with family members and they express what a sensitive issue it is ... AND ... that it involves a child. FM me if you need to vent to a stranger. Sending hugs ... and ... prayers.
Last thing you needed.
