My husband and I had I little girl born in 2003 with swcah.  we are still new to all of this and trying to learn more.  She has had one surgery already and needs another one latter on. She also has been rushed to the hospital one time for her leavels not beeing stable and another time because of high feavers. I have found since she has been born she gets ill alot easier then her other sibilings is that the case with other children with swcah. We also seem to worry when she will start school how this would be for her well she feel okay with her self, also what if something happens and i’m not there.  I know I must seem parinoid but all this seems scary at times and other times everything seems to be okay.  If anyone has advice it would be great for where I live their does not seem to be any one to really  you could talk to.