I am new to this group, but I have found it VERY helpful. I come from a family history of EHK. My grandmother, mother & aunt, myself, and now my son have EHK. Our son was born 5 weeks early and was in the NICU for 1 week... while there, the Ped. Derm. told me of the blood test that can be taken during pregnancy to find out of this. He then told me 3 TIMES, that I should have eliminated or disposed of this pregnancy because of his EHK. Can you believe this? Our son has since battled cancer (NOT related to the EHK) and has won!!! He is truly a MIRACLE, and I just can't believe that Doc said that. Has anyone else had a "run-in" like that? We do have a very helpful derm that our family has seen for years, and is happy with.
Another question/concern... Has anyone been able to get any kind of financial help with anything either for yourself, or your child? We were turned down once, for SSI during his cancer treatments, however, I am not sure of many other programs out there... any help would be gratefully appreciated! We do get some help from the Eucerin company for Aquaphor. Thank you so much, and God Bless all of those precious little ones!!!