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AFBAmerican Foundation®
for the Blind

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my 9mo. old has Lebers...

my daughter has lebers congenital amaurosis and nystagmus. im very worried about her future. what should i expect.any advice is great.
thanks all
kristan
osupuppy@sbcglobal.com

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HelloRe:my 9mo. old has Lebers...



I simply want to tell you that lebers, is the name of a disorder. That no longer prevents a person from accomplishing their goals, this year I will turn thirty. I am glad to say that LCA has not prevented me from enjoying a full life, of course I have needed help, but I have also been blessed with the love of my parents. As your child goes through life, keep in mind, that you can be the best critic, and the number one supporter.


Re:my 9mo. old has Lebers...



Hello friend:
I have been living with LCA for 22 years and I have to say, don't worry about her future if you raise her as a normal child with lots of love. I am a university student, I live in dorms, and I take care of myself. She will be fine.
Wish you the best.
Mimi


Re:my 9mo. old has Lebers...



Kristian, I've found you again! I know that you have come a long way since you posted this, it's been at least a year or so.

For the next person who stumbles upon this post.
Lebers Congenital Amaurosis is a genetic eye disorder that leaves children blind from birth or with very impaired vision. There are usually a host of other issues that are associated with LCA, hearing loss being the most common (I think). The first successful clinical trials on humans during April 2007.
The most important thing to do is to educate yourself, you are your childs number one fan and advocate. Talk with parents of blind children or adults who are blind. Keep in mind that just because they can't see doesn't mean that life should stand still for them.
Raising a blind child takes alot of love, patience, and determination.


Re:my 9mo. old has Lebers...



Can you tell me what Lebers Is? Our baby has Nystagmus along with ONH. She was born with out Optic Nerves But read our posting and you will find some helpfull ideas Sometimes i even forget she can't see she does so well at 3 years old. I remember when we found out i cried for months but she made us see she can do everything and is the joy of our life. Read everything you can find and get in touch with early childhood intervention from your school district. They were a big help to us.


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