Hey, I'm 21 and have battled this bitch of a disease since I can remember. Sorry to hear about your daughter that really sucks. I've been to the same specialist in MI and he's really good, but since I don't live there I've bounced around a lot of them in my area (which is Southern California). And have found a really good retina specialist who works at UCLA. His name is Colin A. McCannel if you wanted to look him up. But as for any advice, you really can't do much about it other than regular visits to a specialist. There isn't any preemptive stuff you can do with it really. The most I could do when I was a kid was just tell my mom whenever I saw something weird, when something changed in my vision. But there were a couple times when it was out of my line of sight and the only way we caught it was because my doctor saw it when I went in for my visit. I believe usually, when children are diagnosed with it, it shows signs within 10 years or so. I doubt you'll have problems until she's able to talk. And when she can, be sure to let her know how important it is to tell you about any changes.

As for my vision, my left eye is legally blind, but I can still see the peripherals on the left and bottom. My right eye is a-okay. So it does the heavy lifting when it comes to sight and my brain has figured out how to see with only my right eye yet still use the peripherals on my left. However, because my right eye is basically essential, it has to be watched really closely by my doctor and whenever anything seems a little off we correct it right away, with laser surgery or possibly something more drastic.

There is a chance that nothing will end up happening to your daughter, I believe it's something like 41% of people diagnosed have the mild version of it, which means there will be no vision loss or any other symptoms. So lets hope for that.

If, god forbid, she does end up having symptoms and it isn't the mild form, you're definitely gonna be in for the long haul. I've had quite a lot of surgeries, somewhere near 15 or so on my eyes, all ranging in risk. Anywhere from laser which takes like 20 seconds, to Cryotherapy (which hurts quite a bit) and takes a few hours. But for the past few years I've been pretty stable and my doctor says there's a good chance I'm done with all the problems, so yay.

Hope I helped at least a little bit, and I also hope your daughter is alright. Sorry for the long ass message.

Hi I’m finding this years later, I was diagnosed with FEVR at about 10 months old, saw the same specialist in MI until I could no longer travel the distance to see him. Since he’s been practicing for YEARS he’s had lots of students thankfully.

If it helps at all I’m about to turn 30, I have no vision in my right eye, and yet I’m still functioning like any other adult. It’s not a death sentence to be diagnosed with FEVR. Hell, I wanted a Dr. In front of my name so I became a pharmacist. Just keep following up with the doctors and if the specialist in MI isn’t close enough look into finding someone nearby that could see your daughter in an emergency who may be familiar with her case. A couple years back I had a hemorrhage in my good eye and panicked. Everything was blurry and there were giant floaters obscuring my vision. Thankfully I was a student at the time and actively on rotation in a hospital with an eye institute, went to the ER and ended up finding an ophthalmologist that did a rotation with that same specialist in MI. Things sometimes work out.

Sorry my comment is months later but I hope it helps and brings comfort.

My daughter has FEVR. She was born without any sight and had two operations at a few months old to make her eyes as comfortable as possible for her. Shes now 7 and I'm telling you, these kids are robust! Shes in a mainstream school, uses a brailler, has best friends and gets around really well. She has a 1.1 braille teacher that assists her in class. She loves everyone in school and the other kids go out of their way to include her in everything.

She also figure skates (since January of this year) and has no fear of the ice. She has her second competition coming up and loves showing people what she can do.

If people tell her she cant do something, she will prove them wrong. Shes very independent and very stubborn.

Unfortunately I cant give you any advice on what may happen due to my daughter having no vision from the start. My biggest advice is, although it's scary, FEVR comes in so many forms and affects people differently, let her be as independent as possible as she grows up. It's hard as parents, we want to cotton wrap our children and make sure no harm comes to them. Let her explore, let her have those head bumps (of course help stop the big injuries), let her make mistakes and learn, let her discover her own way of doing things. I wish you the best of luck, and as a fellow FEVR parent - you've got this!