Hi Group,
I was hoping to get some information on Riley Smith syndrome also known as
Macrocephaly-hamartomas-papilledeme. A very good friend of mine was just
told that her son has all of the symptoms of this syndrome and we can not
find any info on it. The only thing the doctors have said is, is that if he
has it he will be like the 8th child in the world diagnosed with it. Can
anyone help us find some info on it. He has the 6 classic symptoms of it so
we really want to read up on what they are up against. PLEASE HELP!!
Tracy