my son was diagnosed in 1995 with a rare disease called eosinphilac granuloma which cause leisons on his bones he has had ear surgeries both ears each 5 of them has lost 20 % of his hearing had tumor removed from iside his lower spine,this is so rare the gov't doesn't offer funding for research(guess they would if we were celebrites huh)i am looking for any info on this or similiar cases...........ty in advance


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pat