Welcome to you, Mark & Cara! I had no idea this site could be found via Wikipedia, and that it could attract someone from abroad!
Check out what has been posted already under Disorder Resources and Discussion Forum, and add whatever details you care to reveal about your experience to date with SCLS.
FYI, the physician with the most experience treating SCLS in Europe is Prof. Dr. Zahir Amoura, Département de Médicine Interne, Hospitalier Pitié-Salpêtrière, Paris, France, tel 01 42 17 80 03. Encourage Cara's doctors to get in touch with him, or consider going to see him in Paris for a consultation.