My little Girl's fight with KC

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My Daughter has KC in both eyes. We picked up she was having problems in 2013 - she was 8yrs old, but didnt realize it was Keratoconus, that it was a progressive disease or that it needed urgent treatment. Upon a second eye check up with the optometrist he reffered us to a opthalmologist who diagnosed KC and reffered us to the best corneal / KC opthalmologist in Cape Town (SA), Dr Michael Attenborough. She saw him last year (September 2015) and booked her in for CXL urgently. Unfortunatelt only one eye could have thr treatment as the cornea is too thin already on the other eye. School is a struggle as glasses dont help, and she is extremely light sensitive. She also gets very frequent headaches. We're hoping she will be able to manage with contact lenses in the next year or 2 when she's old enough and not so terrified of them.

I've done quite a bit of research. KC is fairly common in young children with Downs Syndrome (especially at her age). Oddly she has a few down syndrome traits but yet she has tested negative for that. I think there is definitley a genetic / chromosomal problem that mean that certain people are born with it. There is no history of that in our family, but since she has other strange symptoms & characteristics of downs, I feel there must be some correlation that connects the dots here and makes sense of the picture as a whole. Havent found what that is yet. But she copes well despite her challenges :)