This week, we have been called upon to make a tough decision about Carys. She’s very small, about the size of a five or six-year-old, yet in nine weeks’ time she’ll be nine years old. Her hands and… Read More
Posted on 15th Oct 2014 by Ali Isaac
Life With A Special Needs Child
Cardiofaciocutaneous Syndrome, Carys, CFC, decisions, delayed puberty, disabled, growth hormone, growth hormone treatment, parenthood, Parenting, puberty, small stature, special needs
I first became aware of this strange human condition in junior school. We had been set a project by the art teacher. I wanted my picture to be perfect, the best I could make it, so I was… Read More
Posted on 2nd Sep 2014 by Ali Isaac
Cardiofaciocutaneous Syndrome, Carys, CFC, communication, cortisol insufficiency, delayed development, disability, disabled, epilepsy, fine motor skills, growth hormone, motherhood, mothering, perfect, perfection, rare syndrome, special needs, syndrome, the perfect child, wheelchair
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