Craniosynostosis & Positional Plagiocephaly Support Inc.

When my child got diagnosed with Craniosynostosis, we were terrified. Craniosynostosis and Positional Plagiocephely Support (CAPPS) had a great website and facebook page with tons of guidance and support. It really made things easier on our family going through surgery.

My daughter was diagnosed with Craniosynostosis at birth. Having never heard of it before a lot of researching was required. I found CAPPS and was immediately welcomed and made to feel like my questions/concerns were valid and normal. The support, love and knowledge of all the women and families I have connected with thru CAPPS has been my Godsend. CAPPS is the reason I made it through my daughter's skull reconstruction!

There for me every step of the way. I never heard of Craniosynotosis until my baby was born with it and these people had all the information that I was looking for. I couldn't have made it through surgery without the support from people that knew what I was going up against. They perpared me and kept me strong when I needed it most. THANK YOU!

I have twins that have craniosynostosis and when we heard the news I headed straight for the internet! The first place I found was CAPPS. Everyone was so friendly and helpful!! Without CAPPS, I am not sure where we would be today!!

Prior to my son being diagnosed I googled every term I could think of. CAPPS was the first thing to show up in a search. It was my lifeline and armed me with the information I needed to appropriately advocate for him when so many doctors didn't know what was wrong or how to help. In raising awareness, families will not have to search so fiercly like we had to in order to find help. Every OB/GYN, every pediatrician and most definitely every pediatric neurosurgeon needs to fully understand this condition and the affects. And CAPPS is on a wonderful mission to raise awareness and support families going through it. Amy Galm is amazing and puts cranio families needs ahead of her own.

As someone from the uk, I only wish I had found CAPPS sooner. My son had an operation for Metopic Cranio back in March 2004. I had never heard of such a condition and was really scared. Although this was 6 years ago, I still feel very strongly about the lack of support that some people receive and that fact that there are delays in children being diagnosed. In my case, my son wasn't diagnosed until he was 18 months and was operated on at 2 years old. Thanks to CAPPS, questions can be answered and families can share their stories and support each other. A truly wonderfull organisation.

I am so thankful to have CAPPS in my life. I have support at my fingertips at anytime. Having a child with cranio, and him going through surgery was a very frightening thing, but knowing that there are people out there with such huge hearts makes things that much easier. I have met many wonderful families with similar stories because of CAPPS. xo