I need information about the syndrome, I have a 11 month grandchild that was diagnosed with this disease and I need information about it. I found that its' a rare disease and there are under 1000 cases. PLEASE HELP IF YOU CAN.

You can write:
BPEI Family Network
SE 820 Meadow Vale Dr.
Pullman, WA 99163
Phone: (509) 332 6628 USA
Or email: Ischauble@gocougs.wsu.edu
WEBSITE:
http://freespace.virgin.net/andy.bowles/
They supply information and support to families affected with such disease.