Hi! Have you contacted FIRST? Have you been to any of the conferences? The best way to find friends for your son is to get involved with the charity. There are also several facebook groups that are quite active and you might be able to find someone his age there.
The charity has several booklets online or in print that talk about some of these issues (www.firstskinfoundation.org
) - the password for accessing them is "skin"
I'd be glad to talk to you further anytime!
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"