For the new family receiving a Prader Willi Syndrome diagnosis

If you have a baby and have received a Prader-Willi Syndrome diagnosis, please know you are not alone! Here is a wonderful video put together by some fellow PWS families...

Visit Top Mommy Blogs To Vote For Me


  1. I wish this video was available 7 years ago! I love it, its brilliant! This Power of this PWS community is what keeps me going. I never would have thought our son, Dante would have brought us so much joy.....I love him and thank him for making my life rich and full. Now I want to spend most of my time trying to figure out how to raise enough money to make his life FULL (literally)! Sincerely Yours, Tanya Johnson

  2. Hi. I have been following your blog since you were pregnant with Lillian. My daughter was recently diagnosed with a rare genetic disorder called Ornithine Transcarbamylase Deficiency. Im not sure if you are aware of a project called the Global Genes Fund. They are raising awareness about rare diseases and celebrating rare disease day which happens to be tomorrow, February 29th. I know there are other families with Prader-Willi Syndrome on their Facebook page. Just thought I would pass it along since it has been another way for me to connect with other families who are going through similar things as well as raise awareness about rare diseases.

  3. We're featuring your blog on our Vanderbilt Prader-Willi Syndrome Initiatives Facebook page today. We thought you and your fans would like to check it out!

    View the post on our Facebook page here: http://on.fb.me/wHZawg



Related Posts Plugin for WordPress, Blogger...