Wednesday, April 29, 2015


For a quite some time now the NAIT (Neonatal Alloimmune Thrombocytopenia) support group that I am part of has been working as a sounding board for a pharmaceutical company which is working to develop a cure to NAIT. 

Let me repeat- A CURE!

When we received the NAIT diagnosis six and a half years ago, I went through several stages... First I was really really sad. There was a good six months of morning where I had to come to grips with the fact that I may never have more children. At that time I was told "Be happy the child you have survived. One more would be risky, any more than that is not recommended." I had to come to terms with the fact that MY body was responsible for this. MY body was acting as a baby assassin. It flew in the face of everything I knew and felt about motherhood. I was supposed to protect my child above all else, not harm him. This something I still struggle with.. I don't know if I can ever forgive my body for what it did. However once the initial sadness passed, I became angry. How dare something I had no control over dictate to me how many children I had? I became completely obsessed with learning everything I could about NAIT, and in the process became more educated than most doctors on the subject. With that knowledge came a great desire for research, and an end to this evil disorder. There had to be a way to cure this. I found an online support group who at the time consisted of about 50 people (we have now grown to almost 1000 worldwide) all sharing the same desire. We wanted to make such a stink about this thing that it couldn't be ignored. We were going to educate anyone who held still long enough to hear about NAIT. Education, as I have learned is power. Here we are six years later, working alongside an amazing company called ProFNAIT, which is now FDA backed, and is moving in clinical trials with their cure.

The interesting thing about disorders, is the majority of the time the cures are made up from the blood of those with the disorder. Such is the case with ProFNAIT. The only way they can create their drug is by using the plasma of mothers who have given birth to NAIT effected babies. So, at the beginning of April, ProFNAIT footed the bill to fly me to Austin and donate my plasma. It was a process I was so proud and honored to be a part of. I may be done having babies, but there are thousands of women out there who aren't. Women who will, until there is a cure, be forced to find out the hard way that they have NAIT. Because there is no prenatal screening, most women are not diagnosed until their first NAIT effected child is born. Unfortunately many times that means the child is born still, or has suffered a life altering brain hemorrhage. This is a cruel and horrible disorder. I don't think I have ever had so much contempt for something in my life. I will not allow our children to be forced to deal with this when their time to start a family comes. This is going to end with us.

In the midst of taking part in something truly altering to society, we managed to have a little fun too. Austin is truly an amazing city. 

Night skyline

 Late night dessert at the oldest hotel in Austin

Boots. Texas is full of boots.

Shopping on South Congress

 Can I just say how AMAZING food truck food is? Well, food in general in Austin is amazing.

 Capital Building

Waiting for the famous bats to fly out from under the bridge.

Last night

Natural bottom swimming hole.

After five days in Austin, Nolan and I drove to Dallas. Nolan flew home, and I spent another five days with my best friend in Fort Worth. The highlight of my trip was finally meeting little miss Hannah for the first time!


1 comment:

  1. Yes, Austin's food scene is UNREAL. Take me with you next time! What an amazing thing to be a part of for such an incredible cause.