I can't imagine what you are going through. Orphan disease is one of the toughest areas to overcome, given its limited market. I sincerely hope that human as a race could put aside all of our differences and really focus on what is most important. I do hope that one day we could make a universal treatment that could fix all diseases and revert damages. Wishful thinking for now. One day, hopefully, it will come true.
让你回国是给孩子孩子看病，不是回去哭 如果回归能治好的话，难道你的面子抵不上你孩子的命？
我自己知道如何护理 为啥求别人？！
我觉得你的思维有点偏激。遇到了不好的医生，我也遇到过。但是你还是要积极的面对解决问题的。不知道你有几个孩子，就算只有一个这个孩子能保证永远不需要找医生的地方吗？你自己全能解决？打针输液或者别的你不找医生咋办？大人也不可能一直都是不需要看医生的
确实如此。罕见病孩子出生成长在美国，确实是不幸中的万幸了。Bless楼主和孩子，携手共进！
Bless
大大的祝福！伟大的妈妈
I sincerely hope that human as a race could put aside all of our differences and really focus on what is most important. I do hope that one day we could make a universal treatment that could fix all diseases and revert damages. Wishful thinking for now. One day, hopefully, it will come true.
big bless
God bless！
Bless, 加油！