close
Athena
B.
My Unique Little Girl
CA ,
United States
My daughter, Eve Troy was born on 12/29/10. I had a perfect pregnancy and had no idea there would be any problems. She is profoundly deaf, unable to eat on her own and requires a gastronomy tube, has an extremely difficult to manage eye condition called corneal anesthesia and she has both gross and fine motor delays. She has a cochlear implant which has yet to show many results. We are, however, communicating with her using American Sign Language and she seems to blossom more and more every day. We have just recently discovered that her symptoms are explained by an extremely rare hindbrain malformation called Pontine Tegmental Cap Dysplasia. There are only about 20 cases of this condition reported in the medical journals. The good thing about this is that no one can tell us what she is or is not capable of and so we refuse to set limits for her. She has brought more struggle and more joy to my life than I could have ever imagined and I am a better person for it. You can find my blog here -http://allaboutevetroy.blogspot.com/