Looong overdue intro

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.