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#28313 - 04/02/12 11:18 AM
Re: Parents of children with harlequin ichthyosis?
[Re: joniba]
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Member
Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
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Welcome! As fae as I know, there are 2 parents of young children with HI and 2 or 3 parents of grown children. They don't come on much, but I do see them on facebook. Find the group "friends of ichthyosis" and I'll hook you up with them. How old is your baby, and have you found FIRST yet?
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Jennifer Ichthyosis-en-Confetti Type 2 Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected. I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"
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#28478 - 06/10/12 06:21 PM
Re: Parents of children with harlequin ichthyosis?
[Re: joniba]
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Member
Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
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Joni, that explains why no one has heard about you here. I didn't realize that you are in Israel. I'll look into what contacts we have out there and get back to you. In the meantime, definitely keep in touch with the other posters in this thread, who also have children with HI. Another mom with a child only a few months older than Omri is here: http://blessedbybrenna.blogspot.com
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Jennifer Ichthyosis-en-Confetti Type 2 Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected. I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"
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