Teresa's Story

[Received Mar 2004]

A Mum emailed the UK group from the USA in Jan 2000 (see ALIAS No. 17, Summer 2000):

Hello, I am a mom of a 11 yr old girl with AIS. I have visited this site a few times in the past year. I have told her a little to prepare her for the future. She seems to have a ‘sixth sense’ about things. When she was 8 she informed me that "she was not going to have babies". I almost crashed the car, and asked why she thought that. She said "I just know". I explained that many women cannot have children due to many reasons, there are other options. I have not explained to her in depth yet, she is not ready. What is a good book to read to prepare myself, and [to] use good vocabulary and timing.....??? Thanks... for any response.

We suggested Dr. Warne’s booklet.

In January 2004 she emailed again:

Is this the site where I would write a response to go the ALIAS newsletter. I am a parent of a CIAS 14 year old daughter. I have a positive slant on things and would like to share some of my experiences.

We confirmed that it was and asked if we could put it on the web site so as to reach a wider audience (reminding her that she'd said, in April 2000: "I am in favor of sharing my information. I think the more we can support and help each other the better."). We didn't hear further from her but reminded her in Feb 2004. In early March she wrote:

I have been so busy these days that I have not had time to formally sit down and write down my thoughts regarding our family's journey with AIS.

We were blessed to have recieved the diagnosis so early on in Karen's life. She was 7 months old when the hernia surgery was done, leading to the discovery of AIS. As everyone, we were stunned, confused, and afraid. A second blessing is that we live in Baltimore Maryland where Johns Hopkins hospital is located. Dr. Migeon was there, waiting for us it seems!, ready to calm our fears and share information. Since that time, Karen has been Karen.... fun-loving, responsible, honor student, and great cross country runner. I must also add she is BEAUTIFUL.

She is now a freshman in high school. She has slowly been told about AIS in stages. She handled each step like it was nothing to it. At approximately 8 years old she told me (as I was driving) " mom, I don't think God wants me to have babies". I hadn't told her that SHE wasn't able to get pregnant, but had shared with her options available to become a mom. I knew then that the journey was going to be a positive one for Karen. She had the right attitude, even at a young age. She wanted to challenge her bio. teacher this year in high school about AIS... but her dad discourged that (hummm... I said go for it HEE). AIS is part of Karen but it does not define Karen. She doesn't like to dwell on what she can't do or be.

I tell her that one day she may be a spokesperson for AIS. She is not convinced of that yet. She does maintain secrecy about her condition, sharing things only with 1-2 of her best freinds. Karen will be undergoing a gonadectomy this coming year. She is ready for that, wanting larger breasts. HA !

Pray for her as she meets the challenges of hormone replacent therapy.

I hope this has been helpful.