Faces of PKS
After a normal, full term pregnancy, the precious little girl we had hoped and prayed for was born on January 13, 1983, weighing in at a healthy 8 lbs. 7 oz. Brittany captured our hearts from the second she was placed in my arms. She had a cute little turned up nose, a pouty bottom lip, a little patch of dark hair on the very top of her head and, to our surprise, an extra little finger on her left hand.
She did become a little jaundice by the second day, but after several days under the bilirubin light, her blood work looked great and we were able to continue loving on and bonding with our precious little miracle.
Since we already had a 4 yr old little boy at home, it didn’t take long for us to realize that Brittany was not progressing like a typical infant. She didn’t seem to pay any attention to any stimulus around her, didn’t smile, cried very little, and pretty much just seemed to stay in her own world. Every time we would bring our concerns to her pediatrician, he would tell us, “She’s just a big baby and is going to do things a little slower”. Realizing we weren’t being heard, we searched for two years until we finally found a pediatrician that listened, understood and agreed with our concerns, that Brittany was indeed a very special little girl.
Although her condition remained a puzzle to many doctors and specialists, we were able to get her into the Special Education system in the public schools at the age of 3. From that point on, with only a diagnosis of profound, developmental delay, Brittany has thrived, on her terms.
We did finally receive a diagnosis of PKS at the age of 15, which at least gave us some answers, but it has never stopped us from celebrating every milestone Brittany achieves, no matter how large or small.
Today, Brittany lives in a wonderful Group Home for adults with developmental disabilities, which is in a suburb of Oklahoma City. She lives a full life and has blossomed into a happy, healthy young woman with her own friends and her own life!
Although Brittany has been non-verbal her entire life, she has taught everyone whose life she touches, the true meaning of love, acceptance and perseverance. We could never have imagined our lives any different.
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