My grandson was born with Trisome 13. They said he would only live a few days to a week. He passed away just a week shy of his 13th birthday. He had multiple problems but was the love of anyone's life he touched. He was blind and deaf but loved to be held and would put his head against your throat because he could feel the vibrations when you talked. It always made him smile. There also is a National Trisomy 13 support group which may help her. My heart goes out to her, it's a rough time and I will keep her and her family in my prayers.