Gillespie syndrome?

Yesterday I posted to groups I am on about the newest scare we have with Amanda, my heartfelt thanks to those who responded.

I have to tell you I am scared for Amanda, I am trying not to borrow trouble, but Aniridia can be life threatening for her. Since she is so thin and fights to gain weight, the possibility that there is something wrong is high. Cancer takes life-giving nutrients and takes it in, but does not allow them to keep the "host" body strong. Amanda eats a lot; she eats as much as Kara, who is getting overweight. Her thyroid is within normal limits, so it is not that.

We have many doctors to see still, GI, ENT, a nephrologist, and a geneticist. Every medical professional who has seen Amanda has asked if there was something else going on with her other than Down syndrome, and of course we won't know until she sees every doctor she needs to see.

I have been reading about Aniridia, and it is possible that Amanda could have Gillespie Syndrome, which is quite rare, but she does not have complete Aniridia, but partial.
http://www.socialstyrelsen.se/en/rarediseases/Gillespie+syndrome.htm This of course would be a better case scenario for her. Her risk of renal cancer would be no higher than any other child's.

Since most cases are in Sweden, and since Amanda is from Estonia, not that far away, the possibility is there. I wrote an organization in Sweden for more information, yes, I know, perhaps jumping the gun? I am relentless when it comes to finding answers, I think I should have been a detective.... Yes, Amanda having Gillespie Symdrome is all supposition, but when either I am facing a health issue, personally or in someone that I love; my first response is to learn about it, and that is what I am doing now.