ONH

Cindy - posted on 11/15/2009 ( 8 moms have responded )

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I was just wondering if there was any parents of children with optic-nerve hypoplashia. My daughter Lacy is 2 yrs old and was diagnosed at about 2 weeks old.. she's my first child and i kinda feel alone right now. i see a therapist twice a month but i still have alot of problem i have to over come in myself.....i was just tiring to find someone that could relate to what im going through.

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Martha - posted on 08/27/2013

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Hi Everyone,
I'm not a mom, but I am a teacher of blind students and have been blind all my life. If you would like resources, a way to connect to other parents of blind children, or just ask a blind adult questions, I would be glad to talk to you. My email is marthaharris87@gmail.com

Amelia - posted on 05/04/2013

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hello. my daughter has optic nerve hypoplasia and she is only a few months older than your daughter. i can TOTALLY RELATE to everything you are feeling and I would LOVE to talk!!

Allison Hannah - posted on 02/11/2013

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i have a child with optic nerve hypoplasia. My daughters name is Aexis she is only 6 months old.. I found out tha she had onh when she was 2 months old.. But she was bor with t an has it in both eyes... Ive found it hard to deal with i got depressed and all that..But what ive learned from it is to be gad thats all she has an dosnt have something worser wrong with her, and i treat her just like any other kid.. I dont let it bother me anymore because it isnt our fault that their eyes are like thar...My little girl does vision therapy with governor morehead preschool. i dont no where your from but i live in greensboro north carolina and hey hav place down here that wil help you ad your family to get help for your baby, like vision therapy, speech therapy, physical therapy and what ever else your child may need help with.... this was very hard for me to deal with to cause she is my only child....

Jordan - posted on 04/18/2011

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Hi Cindy! Yes, I am in your boat. My son has optic nerve hypoplasia. He was diagnosed around 6months. He'll be in May. His optic nerve is 40% smaller than a normal persons. His vision is limited. He's legally blind. But he can see light and dark, possibly shadows and such. He's not walking or crawling, and has other develpomental delays. But he's so sweet and happy all the time! My frustration is not knowing whats to come for his future and his doctors are not quick to help with expectations..I know what your going through. I'm only 22. So I've had to do alot of growing and changing in a short time. But everything happens for a reason. I love my son, as you love your little one! And they'll always love us back! If you need anyone to talk to i'm here!

Karen - posted on 04/07/2011

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Hi cindy. My son has ONH,SOD. We went to china in november and he is going squint at times as if looking at his fingers. stem cells are the future. i have put a conversation about it. contact me for more help ok.

Amy - posted on 08/09/2010

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Welcome. My name is Amy Brown. I am legally blind but do have some vision. I haa brain tumor when I was 4 months and it messed up my optic nerves. Please read Amy's story. I am here to offer parents support. I have a 8 year old son. He is my joy in my life. He is a big help when i can not see things he will help me. He is a blessing from God. God bless you and your little Lucy.

Tamra - posted on 03/31/2010

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My son is 4 and he has Septo Optic Dysplasia, a few hormone problems, no light perception,and I have no organizations anywhere (including blind babies) in my area to help, so I kind of understand what you're going through. My best advice (though that's not saying much). Even more than the therapist, find ANYONE you trust to watch her and go out without kids.

Aside from that, and as dumb as it sounds ... cry. Grieve for the loss of that normal or completely gifted child that chances are, you won't have now. Realize that Lacy can only do what she can do, and she tries her best everyday, but sometimes just like mommy, she has meltdowns and needs time alone or needs extra help, even if you don't think you have it in you to give her that. Take a big deep breath and move on to the next steaming plate of crisis that life hands you. You CAN do it.

Cecilia - posted on 11/20/2009

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i relate with you completly!! my ilias is also 2 and he goes to class once a week and is in with the blind babies foundation. i kno its really hard and ive known since he was 2 months old. how much vision does she have? ilias had some light perception but our last visit to the eye doctor we were told that he has lost the rest so he is completly blind now. i had alot of trouble trying to cope with it and it is still really hard i just had to come to the realization that God does thes things for a reason and you should feel blessed that he trusted you out of so many other moms!! he trusted you to take care of his beautiful and wonderful child and he will show you why when the time is right!!

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