Miliani, curry jones syndrome

My daughter miliani azucena de la Cruz was born July 18, 2015. When she was born they saw that she had malformations of her face and she had extra digits on her fingers and toes. So they sent her to radys children's hospital in san Diego, and diagnosed her with a rare syndrome called curry jones. She is the 10th documented, and they are still trying to learn more about it. In August, she had a surgery for a malrotation. Then she was discharged in September and right now she's been in radys because she has been doing projectile vomiting and it has stopped but with study's they found out she has silent aspiration, so it gets into her lungs, also digestive problems. Which comes with having curry jones. she is now fed through a tube in her nose. Pretty soon they will be doing surgery to put in a g tube. Overall she has a lot of problems. I also drive back and forth since I live in el Centro. But any support will be appreciated, thank you . I will provide a picture with her problems list.