I am glad Dr. Hagan gave you more information. Write back if you have more questions, or need support.
Best,
Anna
also read the section on emedicine (search the term)
JCH IIIMD
Do a google search on Linghthouse International/retinitis pigmentosa. Pediatric rod cone dystrophy is a form of retinitis pigmentosa.
Sorry you are so worried, I can understand why. I will looking some more for you