Hi everyone, My name is Natali. I am 16 years old and I have Pfeiffer Syndrome type II (later changed to Jackson-Weiss… read more


Bryndal F. (17 Months old) Multiple Suture Synostosis (Coronal & Lambdoid), Chiari Malformation, & 6P Duplication Our daughter, Bryndal, was born on… read more


On Wednesday, May 25, 2005, we knew as first time parents our world was about to change. We had no idea just… read more


Amelia Anne was born on 11/09/12 and was diagnosed with Cloverleaf or also known as “kleeblattschadel” Craniosynotosis at birth. Multiple sutures on… read more


This is my daughter Ella who is now 2 1/2 years old. When she was 4 mo old, we noticed a “knot”… read more


Sarah was born in July 2012, healthy, perfect, and loved by her two big sisters. We commented on her tall forehead but… read more


My daughter Sofia was born with a condition called cranio facial nasal dysplasia syndrome. At 10 months old she underwent skull surgery… read more


When Amelia was born, doctors noticed a large fontanelle and although they said they didn’t think anything was wrong, they referred us… read more