Welcome to WHL. I'm so sorry that you've had to find us, but you've found one of the best forums for support. Unfortunately, I am not the authority on everything related to SLE, but I'm sure that Saysusie, the founder of WHL, will come along and offer some words of encouragement as she has experienced parenting a child with SLE as well as having it herself.
There are informative sticky notes that provide some great information. I literally spent hours reading when I first found this website and still asked a lot of questions. Please don't hesitate to post your questions as someone will surely be able to help you out.