Hi, my name is Tricia and I am the mother of 4 amazing children. Our 3rd child Nya is 7 years old and was just diagnosed in November 2012 with Baraitser Winter Syndrome. In the summer of 2011 We participated in a research study at the National Institute of Health(NIH) to discover the gene for Dubowitz syndrome. NIH did genome sequencing on our daughter, my husband and myself and found that Nya actually had Baraitser-Winter syndrome. At birth Nya was only 5lbs 2oz, had low-set ears, lots of hair on her head and a droopey left eye. AT her 6 week appointment the doctor was concerned and recommended we take her to the University of Iowa for genetic testing. This was the the beginning of our journey through denial, fear, frustration, tears, joy and laughter. We now find ourselves on the most amazing journey that we never wanted to go on.
Baraitser-Winter Syndrome 
So Happy that you have found Yvonne,enjoyed your blog,your family is just beautiful.
By: Christine Kalis on November 8, 2012
at 4:09 pm
I just got the phone call that I have been waiting on for over 12 years with finally a diagnois for our precious little boy who has been diagnosed with Baraitser-winter syndrome. Would love to hear from you.
By: LORI RAWLS on September 14, 2015
at 2:27 pm
How are you all doing? I havn’t heard back from you all and I know its busy. Just wanted to see how your precious little girl is progressing. Thanks, Lori Rawls
By: Lori Rawls on September 23, 2016
at 10:16 am