We call her Amazing Grace and she truly truly is.

Grace is a little girl with a very rare syndrome called “Robinow syndrome”. She is almost four years old and has already been on such a long journey. At birth, it was not certain that she would survive, let alone walk and talk. She has done all of these things and more.

Grace has had brain surgery to place a shunt to relieve fluid from her brain, a feeding tube for the first two years of her life and a never before performed surgery in Philadelphia to correct her structural problems. The surgeons replaced part of her backbone with rods and screws and placed vertical expanders on each side from her shoulders to her hips. These will help her grow straight and continue to be able to walk.

She has already had one expansion surgery to allow for her growth and will continue to need these surgeries two to three times per year in Philadelphia, until she is sixteen or seventeen and stops growing. Her father, George, works very hard to support Grace’s family of five, her mother works with Grace every day in therapy and keeping up with her nineteen doctors. You can follow Grace’s journey on www.carepages.com at graceweloveu.