For those who don't know, my daughter was diagnosed about a year ago with an extremly rare( 300 cases worldwide) genetic disorder. It is called cardio-facio-cutaneous syndrome. It is not something that Rene or I gave her, she is her own mutation and it just happened. It affects each child differently but can be a life-threating thing. Fortunatly, Stela is not as severe as a lot of other kids with the syndrome. Currently Stela see's a cardiologist for her heart, she has pulminary stenosis, a neurosurgeon, she has hydrocephaly, a developmental specialist, a G.I. specialist, an Ear Nose and throat doctor, for her awful ears, a geneticist, an optimologist, an immunologist, a urologist, she had kidney surgery at 6 months old, and her 3 therapists, one for physical, occupational, and speech. She is such a strong and resiliant baby. Through all of this she continues to smile and amaze me. Stela is so lucky to have such a awesome big brother who is very protective over her and makes sure no one messes with her. I can't wait for them to get older and for him to continue to protect is baby sister. A family whose son had this syndrome and passed away at 26 months old, said that they would tell him every night of his birth story. They said not his real birth story and all the pain and problems, but of the story of how there were so many children that wanted them to be their parents but that they chose him and wouldn't change that for anything. I feel the same way about Stela. All though it is sometimes discouraging to see other children Stela's age walking and talking and eating, we try not to let it get to us because we are so proud of Stela and everything she has acomplished and continues to accomplish. She is our angel and our hero and has taught us the importance of health and family. For more information on Stela's syndrome, visit http://www.cfcsyndrome.org/.
