Devastated

Soapstone

We found out last week that our daughter has Usher Syndrome and is going blind. She is already deaf but is doing well with CIs. We had a disappointing genetics visit today and were basically left with no hope for a treatment or cure. I wish there was something, anything I could do.

Jenny952

I'm so sorry to hear that.  You have a lot to process.  I hope you find a doctor or specialist who can help you and your family.  (((((HUGS))))))

realisticdreams

I'm so sorry, I follow a blog who is a woman who has adopted several children with special needs one of whom was an infant (she is 18-20ish now--I forget) and she is deaf blind.  She has great quality of life though.

I hope the genetics doctor

thefuturemrskudla

I don't know which state you are in, but every state has a deafblind agency. They will have loads of info and support for you.

Florak8

I am so so sorry.

I know you are just starting to grieve, but I do want to tell you that there is really a lot that deafblind people can do, especially when the person started out having one of those  senses. Your daughter will remember what

grbnik

I am very sorry.  That is a lot to handle.  Please let me know if I can help in any way.  I can PM you my email if you like.  HUGS

d.f

I'm sorry. Sending good thoughts.

malcivar

I am so sorry.  As other posters have said, once you've had some time to process, you should get in touch with your state's deafblind groups.  They will help you help your daughter have the best quality of life possible.

Assembly_Reqd

Hugs. It is hard to leave appointments with no hope. You do have some time on your side and the ability to expose your DD to the tools she may need in the future.

I met a wonderful 17 year old girl with Usher Syndrome recently. She has a CI and i

macncheeze

I am so SO sorry! HUGS!!!

smiling76

That is so much for you to handle and process.  I'm so sorry.  I know words can't make it any better but know you have us to lean on anytime. ((hugs))