What is Senior Loken Syndrome?

Yulia has suffered with it since birth and the disorder presents pretty classically which means in addition to degenerative kidney failure, Yulia is also losing her vision because the syndrome affects the rods and cones inside of the eye. We are all in awe at her resilience in the face of all of this. Her last appointment with the psych cleared her for transplant which doesn't surprise anyone that knows her. She is a tough little girl. We will update you again on Friday after her liver tests. Keep praying. We believe in miracles!