Rare disease/cancer gentic???

In my dads side of the family there is a cancer or disease that seems to be genetic but I can find any information on it.  My mom can't remember the name of it and my dads side of the family isn't answering my questions.  Have lost several aunts, uncles and cousins on that side from it.  Only info I have to go by is that first it is seen as spots in the ear(s), later there are spots in the eyes and eventually it spreads to organs in the body slowly shutting them down. My mom remembers that one of my uncles was diagnosed as a toddler and survived into his 30's before it finally shut down all organs but he was sick with constant infections.  Anyone know the name of this?  Mom said she was pretty sure they said it was a type of cancer as that is what has killed off most of my dads family now.