I started this blog shortly after Jameson was born. I spent hours searching for other families, kids, and adults out there that had been through this and that knew about Pfeiffer syndrome. But, information was limited. I began documenting our journey to reach out to the world and connect with other families out there. It quickly became therapeutic for me to write.
I can honestly say that when Jameson was born, craniosynostosis, let alone Pfeiffer syndrome, was something I knew absolutely nothing about. We have learned so much about craniofacial syndromes and craniosynostosis along the way. In the beginning it seemed like a race gathering medical information, all the while coming to terms with understanding what new path our lives were now on.
Now that we have that under our belts, navigating the social aspect that comes with having physical differences has been challenging, emotional, and rewarding all the same. I 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. I know it has helped me immensely.
Fast forward to 2016:
Earlier this year a meme was found circulating the internet of a picture of Jameson making fun of his physical appearance. It has been a fight; a roller coaster ride for sure. This terrible thing has brought so much awareness and has really inspired us to do as much as we can to create change. There are legal and moral issues surrounding this issue, and we are determined to make an impact.
Kids born with craniosynostosis, syndromic or not, spent countless hours in the hospital, and at doctor’s appointments. Kids and their families miss out on so much time that should be spent on simply being a kid and enjoying life. In addition to the medical challenges, our kids deal with the stares and whispers of people who don’t know or haven’t been around kids who have differences in their appearance.
We want to change that.
As of June 3, 2016 Jameson’s Journey officially became a 501c3, non-profit organization! My husband and I feel like we are traveling down a road that we were meant to be on, and it truly feels amazing! To learn more or check out what we have going on our official website for the non-profit is www.jamesonsjourneysa.org.
We hope to share so much with other cranio families as they travel on their journey. We have been given so much from the cranio community and we want to give back everything that we can. We hope to bring joy and smiles to as many faces as we can while spreading awareness and education about cranio, Pfeiffer syndrome, and how to simply be kind to everyone!
But stick around here – I’ll still be blogging about Jameson and our family on our crazy adventures in this wonderful life!