This blog was created for our son Jameson. He was born with syndromic craniosynostosis. Jameson has a very rare disorder, and we are currently waiting for his test results to come back, but we believe he has Pfeiffer Syndrome.
Jameson was born January 7, 2012. I had a completely normal pregnancy and we weren’t expecting anything other than a 100% completely normal baby. To say we were surprised is an understatement. I never once in my life imagined I would be the mother of a child with craniosynostosis. But in the few short weeks I have gotten to know the dear, sweet soul that is Jameson I now can’t imagine my life without him. Jameson was born into a very loving family, he has an older brother that is already protective over him and a mommy and daddy who love him dearly. Not to mention the numerous cousins, aunts, uncles and grandparents that love him!
We have already learned so much about Jameson’s condition, something I honestly knew nothing about 3 weeks ago. We hope that sharing our experience and Jameson’s journey throughout this process will help other families and children in similar situations as well as to help educate and spread awareness as we ourselves continue to learn along the way.