If you get a moment, please visit www.naitbabies.org. This website is just the first phase in our quest to spread the word about NAIT and to push for NAIT screening as a routine prenatal test. Believe it or not, NAIT affects 1 in 800 pregnancies (more pregnancies than many of the other more well-known conditions like Cystic Fibrosis and Down’s Syndrome) and is not currently part of routine prenatal testing. Why? Because it is very expensive to screen for this condition. So, as usual, it all comes down to money. That said, if you could just take some time out of your day to visit the website and to take a peek at what other NAIT mothers, like myself, are fighting for, it would be much appreciated. Feel free to pass the site along to anyone you think it may benefit.
Our story, along with some photos, is up on the site http://www.naitbabies.org/stories/henshall.html. Additionally, a video, which explains the disease, its effects and current treatments, is also available for viewing at http://www.youtube.com/watch?v=BZtwMW4KPGM&feature=mfu_in_order&list=UL. Clara is featured twice in the video — once as a newborn and then again as a one-year-old NAIT survivor.
More posts — including one on our recent trip to Chicago and all the fun that ensued — coming soon!
Filed under: Clearly Clara, NAIT
