First, congratulations on your marriage. I read one of your previous posts and it sounds like you might be newlyweds. I am 36. My hubby, Mark, and I have been married for 10 years. We have three precious and beautiful children (Sophia, 8. Harrison, 5 and Evan Paul, 1)
Little Evan has EHK. My biggest piece of advice would be to contact FIRST (www.scalyskin.org
). They can connect you with support people and/or mentors. I am 99% sure they have a good sized international group going. EHK is quite rare. It sounds like your husband's case is like my son's, a mishap during creation. The medical community called it a spontaneous mutation, but I do not like that lingo.
Best Wishes to you and Michael. Feel free to e-mail me privately (firstname.lastname@example.org)