finding support during your cranio journey

I have found overwhelming support by connecting with people who have experienced the trauma of craniosynostosis surgery.  They are willing to share their stories and answer your questions and most importantly, provide emotional support during such a heart wrenching time.  The internet is a great resource, but the overcoming information can be mind-boggling, even paralyzing at times.  It is easy to get swallowed by information overload, only to send you on even more of an emotional roller coaster.  There is nothing better than taking your research to a personal level, talking to someone who can share your emotions and relate to your fears and help to answer your questions.

A HUGE thank you to Liz and her angel Mikayla, who gave us the love and support we needed to get through Thomas' surgery.  It is amazing how two strangers can come together in such a powerful way, all because of our incredible children.  She has inspired me to reach out and make a difference in someone else's life, just as she did in mine.  She is the reason this account of Thomas' journey was created. 

Following is a list of websites that have been very helpful to us in our journey with craniosynostosis.  They offer assistance, support and may answer questions that you did not even realize you had.  They are also a great path to other links, including craniosynostosis websites and blogs.

Mikayla Love's Blog - Mikayla Love Harbord and her journey with craniosynostosis

The Cole Twins from Northeast Wisconsin - "Our life stories of Carson and Cooper's prematurity and craniosynostosis, and Riley, Keegan, and Carson's, battle with A. Chiari Malformation type 1"

CAPPS: Craniosynostosis & Positional Plagiocephaly Support

Cranio Kids: Fun, Friends, Craniosynostosis Support

Cranio Kids, South Africa

The Jorge Posada Foundation - The Foundation reaches out to families in need who's children have been affected by craniosynostosis and provides them with emotional and financial support.  It's goal is also to get the word out about craniosynostosis and educate the public and medical community about the condition.

(Please view this video documentation about craniosynostosis.  It really is a great account of what the Jorge Posada Foundation is all about).

The Childrens Hospital of Philadelphia (CHOP)

Kaci King, Author "Light Will Emerge" - Kaci is the Mother of two beautiful children, both who share two medical conditions: craniosynostosis and chiari malformation