Coping with the Diagnosis of Aniridia

For your copy of Just Diagnosed: A Parents Guide please write to...
Hannah@aniridia.org
Hannah James
Aniridia Network
109 Gavin Way
Colchester
CO4 9FR
Great Britain

A Mother's View

"Been there..
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.
~Charlene~ "

Mrobertz
5/30/99 7:16 pm
jhroberts@hotmail.com