New Link – For Thanatophoric Dysplasia
This was written By Mary C. She gave birth to a little boy she named Anakin. Anakin was born with a form of dwarfism called Thanatophoric Dysplasia. Mary hopes that by sharing part of her story will lead you to learn more about Anakin and give parent’s in the same situation parental help.
April 28, 2008 was the best day of my life and one of the worst as well. I became a mommy that day to my little Anakin, but was shocked to find out that he had a form of dwarfism. By the time that my husband and I had gotten our minds around the idea of having a child with dwarfism, just an hour or so later, we were finding out that he would probably not survive. In fact, he didn’t. He lighted our lives for 34 days and his site (http://anakinssong.com) is meant to allow his light to continue on. We want to tell his story and hopefully help others in the process.
We were changed. We were parents. We were lost. We are not yet found. We are parents still. And our baby boy is a big brother to average, healthy twin sisters now. Our experience with Anakin, with dwarfism, with losing a child, has put us in touch with some of the most amazing people on this earth. We are blessed to talk with every one of you and share our experiences with each other.



This post has 3 comments
April 27th, 2010
The Doctor’s informed my husband & I that they believe that our little girl has Thanatophoric Dysplasia. I’m only 20 weeks along. Please help me. I’m not sure how to deal with all of this. I have handed it over to God, but still feel full of sadness & helplessness.
May 6th, 2010
Monica – Please email me at jannob980006@yahoo.com
July 4th, 2010
http://www.lexingtonwoman.sc/content,publication-summer2-2010/
Would love to check in with you and see how you are doing.
This is our story. (on pages 8-10)
Our sweet baby Benjamin was born June 10, 2009.