By Daniel J. Vance MS, LPCC
The day Chiara (Kiki) Roberts was born, her physician most certainly didn't win any awards for tact or compassion.
In a telephone interview, Kiki's father Brian Roberts said, “Kiki had skin tags on the side of her face, abnormalities of the cranio-facial region, low set ears, and a small nose and lower jaw. They rushed her out right away and after a while the doctor returned without her, saying, 'Your daughter is going to be disabled and probably a vegetable the rest of her life. We think she has Goldenhar syndrome.' The doctor turned and walked out. My wife and I were flabbergasted.”
Four years later, the Robertses learned Kiki had Emanuel (instead of Goldenhar) syndrome, which affects worldwide perhaps a hundred people. According to the National Institutes of Health, the syndrome is a chromosomal disorder disrupting normal development and affecting many parts of the body. Roberts said doctors described the syndrome as a lifelong “severe physical and mental disability.”
At 9, and now living in Minnesota with family, Kiki has been doing well. Said 41-year-old Roberts of his daughter, “She's super funny and loves to interact with people. She can't interact verbally, though. She has a really sweet spirit and can be comical in what she does. She is definitely developing a personality. You can tell when she's not happy, for example.”
She enjoys school, interacting with peers, and learning to walk. To get around, Kiki presently uses a wheelchair pushed by others. Roberts said kids and adults often seem scared and don't know how to interact with her.
Though an ordained Southern Baptist pastor, Roberts hasn't been serving any particular congregation of late. He's employed in private industry.
While explaining what happened to his daughter from the standpoint of his faith, he said, “Kiki is my child and God blessed me with her. I wouldn't want her any other way than what she is now and I don't think God wants her to be any other way. People say they will pray for her healing—we hear that a lot—and my wife and I appreciate those prayers and know God can answer them. If in the future God chooses to heal her and make her 'normal', that would be good, too. But for now we are striving to give her the best life we can, just like we do with our other child (a 15-year-old boy).”
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