New Member-About me!!

[Guest guest]

Hello everyone!! My name is Nancie Bentley. I am 20 years old and

live in Belton, Missouri, USA. I just found out today that my

daughter has Blepharophimosis. Zakiyah is 3 months old. She

inherited her " small eyes " from her daddy! I really shouldnt say

that I found out that she had this condition today, It is better put

that I found out that her " small eyes " as I call them, acually have a

name. My husband also has this and he never knew that there was a

name for it either!

I am very happy that I have found this support group because I know

nothing about the condition, what is can cause, how I can help my

daughter and husband, or if I can help at all. I have so many

questions, and most of all I am scared for my daughter because I dont

know what this disorder can cause, or how bad it can get, even though

she seems perfectly healthy and happy. I really dont have anyone to

speak to about it either.

Although my husband has it, his family kept him very sheltered and

they knew that he had a disorder to cause his small eyes but never

really looked into it. He doesnt really like to speak about it. It

makes me upset and I feel bad for him, but I want answers at the same

time. All he knows is that the doctors wanted to do surgery when he

was little and his parents did not agree. Now that we have a

daughter, he says that she is fine, that I shouldnt take her to the

doctors because all they will do is want her to have surgery to make

her " appearence " better, but I dont know if this is true! Is the

surgery only cosmetic or is it benefitial to her health? I dont

know! So many questions and no answers. This is why I need SUPPORT

for my family, and I need answers!! Anyone that can tell me

anything, please do, I would appreciate it SOOO much!!