Toni's Story

[Received Feb 2001]

My name is Toni. I am a mother of three beautiful daughters.

I have three sisters and one brother. I will jump to chase.

I heard and learned about AIS and am still learning.

29 years ago we learned that my oldest sister has AIS, she was only 11 years old at the time. At a early age she had to go through the female surgery and numerous pills. At that time we didn't follow up on learning more about AIS because we figured that this was not very common at the time and we, meaning the rest of my sisters and myself, were younger and had kid things on our minds.

Well time passed and we got older and my sister a year older than myself had 2 daughters, and I had 3 daughters. My older sister's youngest daughter as a baby was diagnosed with AIS and had to have one testis removed. My youngest sister at the age of 16 was diagnosed with AIS. Then, to add to it all, my two oldest daughters were tested for AIS and have it. One is 21, one is 19, and my youngest is 14 (she has not yet been tested for AIS).

We have talked alot about it. This is a very open topic in our family since so many of our family members have AIS. I pray so often that none of my girls would have it (so far, 2 out of 3 do, I prolong testing my 14 year old) the thought of them not being able to have children, or me having grand children.

I try to stay strong for my family members with AIS but some times it is too over whelming, I lay awake at nights thinking how it would sound just once to hear a doctor tell me and my daughter she doesn't have AIS. If she has AIS we will deal with it, as we have with the rest of our family, loving them for who we are and trying to learn more about AIS so that we fully understand it and not let it tear us up.

When I first started typing this out I was very much in tears. It seems to really help to tell others about it, whether it be by your voice or just by typing it out.