Hello.
My nephew is in the same situation. His Genetic Doctor says she is 90%
sure he has Saethre-Chotzen Syndrome (his insurance won't pay for the
conclusive test).
We don't have any information at all and are finding online research,
scarse.
Would you be willing to help us or offer any information you do have?
Thank you for considering.
Jody Waddell for Joel
