Supporting people with aniridia and their Families
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Coping with the Diagnosis of Aniridia
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A Mother's View
I know it is very hard when people tell you not to worry. Being a
mother of three, and only my middle child had the aniridia, it
was VERY hard to find out that Tyler had this eye condition. We
found out when he was 2 weeks old. Of course the first thing you
ask is "Will my child be able to see?" and it hurts
even more when the DR says "We don't know how well he will
see" And then you start thinking about all the other
questions...will they wear glasses, what if the pressure rises,
what if they find a Wilm's tumor, will my child be "normal"
ect... When Tyler was younger (he is 4 now) I felt as if he was a
bomb (I stress that is how "I" felt) Would there be a
day when we would wake up and find that his pressure had risen?
Just not knowing was so scary. This does not run in our family
either which at times we asked ourselves why???? I am glad to say
as far as sight goes...he has had only one operation at 3 months
old (a goniotomy) and his sight right now is 20/20 in his right
and 20/40 in his left. He started wearing glasses at 9 months old.
And so far all of his ultrasounds have been clear. If you would
like to email me with other questions I would be happy to try and answer them. The only other advise I could give you is just to
love her as you do your others as I'm sure you will. I could tell
you not to worry but we are mothers that is part of our job. :)
So I will tell you to just keep positive thoughts.
5/30/99 7:16 pm