I don't usually post/comment. But, I've been lurking for 3 years. I started reading when my DD was diagnosed with Nystagmus and Heart Failure over a 2 mo.period. Due to they nystagmus, they thought that she had Neuroblastoma so we spent several days ruling that out. Then a month later, she was in severe heart failure. Long story short. She ended up having Alstrom Syndrome. It's extremely rare, causes blindness, hearing loss, multi-organ failure. she also has echolalia, dev. delay, hypotonia, wears SMO's, extremely photophobic because her eyes don't have a natural light filter, possible urinary retention, and some others I'm sure I forgot. We have an appt with Dev Peds Psychologist for a full ASD eval in 1 mo. I have learned SO much from you ladies. Especially about ASD. I really need to start posting more, especially to have the support here.