Will’s Way, Life with Cornelia deLange Syndrome

Your sixteenth birthday has come and gone.  I was prepared for a depression or sadness to hit…but it didn’t.  You were so happy on the day of your family party…enjoying every bite of bread dip, each present and TWO versions of Happy Birthday to You!

So, you are not driving, you are not going out on dates, you aren’t studying for your psat’s, playing football, going to the Homecoming dance…but you are happy.  Mostly.  On a day to day basis you have simple pleasures to keep you happy; playing the piano, being pushed on the swing, orbiting through the house, going for a ride in the car.  You are safe and within sight and I don’t have to worry about you getting hit by a car or getting your heart broken by a dumb girl. 

 Medically you need a tune up.  We’re trying to arrange a multi-specialist visit in Boston to take care of ears, teeth and esophagus.  It’s proving to be challenging.  In the meantime we’ll try to keep you as comfortable as we can.