I'd like to speak to that from my personal experience with my daughter when she was born. It took almost three years before they labelled her, and they still weren't sure of the label, but she has the worst-case scenario of this very rare condition. We went though I don't know how many different geneticists at the beginning. As Margie said, the first thing they say is that it's in the family. We went through everything, and for want of anything else, they said it was hereditary. It was terrible.
First we were dealing with health issues. She was very seriously ill. We felt as if we were responsible for what had happened to Tracy because of the lack of knowledge of what had happened. Was I a drinker? Was I on drugs? Were Jimmy and I related? We went through that whole scenario, and I can't describe to you the hell we went through in those first few years.
Even to this day, as I mentioned in my talk, the doctors are flying by the seat of their pants. They don't know what's wrong with her. In the last few years she started having seizures, but they're not really seizures. They're calling them seizures for want of calling them anything else. She flat-lines. She's just there, hardly breathing. We don't know what causes it or how long she'll be in it. She was like that for five hours on one occasion. They worked on her like you wouldn't believe, but they don't know.
A year and a half ago she went into one of these, and the doctors hospitalized her just to see if it would happen again. But of course Tracy fooled them, as she always does. Nothing happened, so they sent her home. The doctor spoke with me very nicely and said, “I don't want to tell you not to bring your daughter into the hospital. But when she comes in here, we have to poke and probe.” At one point they tried about 15 to 20 times to get an IV into her, because her veins are so tiny and they couldn't do it. That's very painful for her. He said, “Maybe you should just keep her home if it happens again and hold her hand. If you bring her in here, we're going to treat her and it's going to be painful for her. But there's absolutely nothing we can do to bring her out of this. She comes out of it on her own, for whatever reason.”
The doctors are not looking at the environmental issues. Was it the chemicals? Is her condition the result of the spraying of agent orange?
I forgot to mention before that I have three stories: my husband's story, my son's story, and my daughter's story. I gave them to the clerk, and he can pass them out. They will give you a little more information about what our lives have been like because of all of this.