Help Leilani Tellez with Gaucher Disease

I am Alfredo Tellez father of Lailani Marie Tellez, our daughter was born on November 15, 2022 on 01/06/2023 she was diagnosed with a genetic disorder called Gaucher’s Disease. Its an incurables disease’s that affects the organs such as lungs, spleen kidney, liver and also the brain. She has been thru a lot. She was born in Mexico and was in the hospital a little over a week. She had a seizure and her bilirubin levels were high which caused jaundice. Since my daughter was born in Mexico I had to get her an emergency U.S. Passport in order to transport her across the Mexico-U.S border. for a better medical evaluation. She was at Harlingen hospital and had blood lab work done indicate her ammonia levels were high which can cause brain damage, coma and even death. They did not have the specialists to treat her at the hospital so they transport her to the Children’s Hospital of San Antonio on December 11th. Shes been here ever since. My wife was able to get a permit to cross the border legally to be with our daughter. Her permit was only for 24 days and we’ve been getting informed by a family lawyer to apply for AOS in order for her to stay in the U.S. She does qualify and the process takes from 7 to 12 months. I have not worked since November of 2022, and we are going thru very difficult times. We are hosted at the hospital and nearly getting by with the help of family and friends. Not sure when our baby would be released since she has good days and bad days. She recently had surgery and was put in a G-tube (feeding tube). She will definitely need a lot of care and therapy along her life time. Would greatly appreciate any help.