[blindkid] for Tuesday, about Leber's

[Joy Orton]

Dear Tuesday,

I want to echo what other parents have said here. First, hugs to you! You
are going down a rough road right now. Second, keep on going to doctors as
necessary to get a diagnosis that  really fits your son's symptoms. Third,
keep advocating for your child and what he needs in school.

You mentioned that the genetic test did not show he has one of the genes
for Leber's Congenital Amaurosis (LCA). When we had our daughter tested in
Dallas (Retina Foundation of the Southwest), they told us there are some
genes that haven't been identified yet for LCA. So even though she doesn't
have any of the genes they are working with, that doesn't mean she doesn't
have LCA. Your son's condition may or may not be Leber's Congenital
Amaurosis, but a genetic test--by what I understand--may not be able to
find it or rule it out.

Please keep in mind that I am not a doctor nor genetic specialist; I am a
mother.

I hope this helps.
Remember the parents and others on this list are here to help. Praying for
calm and comfort for you right now.

Joy