Why Spread Awareness?
Before you heard of craniosynostosis, did you ever see a child who maybe looked a little different and wondered to yourself why that was? Perhaps you were the one holding a baby that received the puzzled and sometimes startled looks. How many times did you think to yourself "I wish they would just ask" or "My baby is beautiful, I wish they understood what he's going through"? Chances are you may have been told by family or friends not to worry about the shape of your child's head and that it would round out if you changed his or her sleeping position. You may have also heard a story from another cranio parent of how they experienced a delay in treatment for their child because no one would address the concerns they had about their child's head shape or developmental delays. Do you remember the first time you heard the word craniosynostosis, and how terrified you were because you had no idea what it meant for your child?
We are sure that all of you reading this can relate to at least one of the above statements. These are all reasons we need to work together to make those around us aware of what this condition is and how it affects our children. By making craniosynostosis a more recognizable word, we can ensure that more children are seen by physicians when there is a concern about head growth or overall development. We can help ease the anxiety that comes from hearing the diagnosis for the first time. Just as important, we can help society understand and love our beautiful little cranio kids.
*Source - craniokids.org