Son With Kfs

Hello everyone! I have a 6 year old son, diagnosed shortly after birth with KFS. He has the very short neck and low hair line. He is the most energetic and happy kid! I am so scared that he will start to be hurt by people's comments. People already ask about him having no neck. He is very knowledgeable about it, and will explain to people that he has a "bone problem" in his neck. He is missing 1 full vertebra and there are 2 spots where he has fusion. He is remarkably shorter than other kids his age, but twice as energetic.

I know this is a group for people who actually HAVE KFS. But I was hoping I might get some tips or advice you might have for raising a young child with KFS, just starting school.

Thank you for your time and the stories you have posted.
kfsmama kfsmama
1 Response Sep 16, 2012

I have a daughter my oldest with kfs ,we found out when she was four , later on, in school some were mean and called her a name , and some do not understand that people are different . I think adults are the ones to point out differences and they react to their parents perception of others. this was not a genetic disorder, I had to take seizure meds phenobarbitol it was suppose to be the safest med for pregnant women and children , but you needed to take vitamins before you wanted to become pregnant . they left that part out . she is now 35 with three children. she is strong,and able we did not treat her different.