Lets tell each other our stories.

Amy - posted on 12/09/2009 ( 6 moms have responded )




Hi Everyone,

I would love if we told each other about ourselves, and our children. How did we loos our vision or some of it.

How did your children loss their visions or some of it. Share our experience of what happened and how it happen. If it is too personal or too painful and do not wish to get into that it is ok. For me when I was 4 months old I had a brain tumor the size of an egg and they had to shrink it to nothing. It was not cancerious at all and they did remove it but the tumor messed up my optic nerve which mess up my vision. I had surgery for lazy eye in my left eye and 3 other eye surgeries but do not remeber what they all were for. They thought I would loss all my sight. My sight is stable praise the Lord for that. I was in the hospital for pneumona something close to it . I had my tonsils out at 7 years old. So I was in and out of the hospital a lot when I was young and very sick. From my tonsils I was always sick with sore throuat. When I was 21 I developed allergies, acually it was earlier then that but that is when I found out about it. When I was 30 I had my gallbladder removed. I went to Overbrook School for the blind in Philadelphia PA. I live in Reading PA. and was born and raised in Reading PA. I am 42 years old. I am blessed truely blessed. I wanted to do this to give each other insight and get to know each other. Plus I thought it might help the Moms who have children with vision problems or compleatly blind. Take care and God bless you all.


View replies by

Amy - posted on 08/27/2010




Welcome Ilene. I hope you find this group helpful. We are not real active but hopefully we will be. I also have a stigmatism in my eyes as well. I had four eye surgeries.

Ilene - posted on 08/27/2010




Nice to find this group. I am Ilene and I was cross-eyed as a newborn. When I was five I underwent surgery to correct this. I have spent years with astigmatism and other eye ailments. Currently I am 43 and have fairly good vision with eyeglasses. When I was a child back in the 1970's the eye doctors shook their heads and said "We can't help". I had 20/60 in one eye and 20/80 in the eye I had surgery on. Luckily in 1980 my parents found an eye doctor who said we can't give her perfect vision but we can help quite a bit and I've worn glasses ever since.

Now my six year old was born with his eyes all messed up too. His diagnosis is different and he has Amblyopia. He wears a patch 2-3 hours a day now and they just changed his rx to include a prism in his glasses to cut down on the glare. We will see if it helps. I've heard amblyopia is permanent if it isn't solved by the time they are seven so I hope not as that is only three months away.

Cat - posted on 03/26/2010




When my son was born (august 2009) he had lack of oxygen for 10 minutes which has has caused severe brain damage.he was hospitalised for 3months with hyperinsulinism (a genetic disorder causing blood sugars to remain seriously low) this also caused some of his brain damage. we got told he would suffer major problems in all areas (sight, hearing, speech, mobility) however we do not no the extend of these problems till he gets older. but last week we had an eye test which has confirmed he has significant visual impairment. he his not completely blind which is good but can only see outlines and things up close. however this may all change has he grows. he is a very special little boy. has any else been in similar circumstances? are there ways i can help his sight get better? many thanks xxx

Heather - posted on 12/11/2009




I had Retinal Blastoma (tumors in the eyes). I lost my right eye at two years old. When my first son was born I had him checked for it, and they did so, but explained to me that it isn't genetic, and was just by random chance that it happened to me. Since I was the only one in my family with it, I believed them. Well, when my second son was born I didn't have him checked. By a week and a half old the tumor was big enough that I could see it in his pupil. He lost his right eye before he was even a month old, and has since been through chemotherapy, radiation treatments, and laser surgeries to save his left eye. In the end I am thankful that I had experienced it first so that I know what my son is facing, even though his is more severe. It is genetic, and they traced the gene so they can test for it. All of my other children are okay, and if my son ever has children they can test for it as soon as they are born. All of his children will have a 50/50 chance of having this cancer.

Sher - posted on 12/09/2009




I think thats a awesome idea. Well I am Sher and I have a stigamtisim. THough for me its come and gone so often now I almost need new glasses every few months. My daughter though is four. Shes my middle child. (I have a older son whose turning 6 soon, and my youngest is just 2 months old.). she was diagnosed being blind recently. But since she was 2 1/2 weeks old her eyes twitched. Nothing out of the ordinary, but then at 2 years old she had a MRI, where we found out that she has opticnerve hyperplaysia which means the line in on eye between brain and the eye are so tiny it doesn't give much information. Then she had another MRI due to grey spots. I live in Canada in the praries.. well here we have one pedatric eye doctor for three provinces. He wasn't much help. But now we see a lady from CNIB (Canadian National Institute for the Blind). And its great to know my daughter has some one to help her out and show me how she can still be so independant. Needless to say we are still trying to figure out if its genetics or my ex that cause the main root of the problem. But for a kid. Shes defenitily coped other ways. Musically and bugging her older brother. -lol-

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