tag:blogger.com,1999:blog-6113641574975321616.post1650219269999481846..comments2024-03-01T04:27:08.864-08:00Comments on ~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis: Educating the Trolls..De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-6113641574975321616.post-19943700877626849022014-02-18T18:57:17.535-08:002014-02-18T18:57:17.535-08:00OK, your family is just the cutest and most wonder...OK, your family is just the cutest and most wonderful I've encountered in a long, long while. I have learned so much on your blog. You have really outlined what living with HI is like on a day-to-day basis. As a mom of special needs kids, I know how important GOOD information is, so kudos to you for learning FAST and doing what it takes! I am totally in love with Evan! His smile is contagious, his spirit indomitable, and I think he's got a bright future! Marynoreply@blogger.comtag:blogger.com,1999:blog-6113641574975321616.post-67030585810571243182013-01-14T14:03:12.968-08:002013-01-14T14:03:12.968-08:00I love your blog DeDe and I love that little boy! ...I love your blog DeDe and I love that little boy! You are both amazing. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6113641574975321616.post-45263073536731798612012-12-31T05:57:54.702-08:002012-12-31T05:57:54.702-08:00Agreed! I just checked FIRST's page and the pi...Agreed! I just checked FIRST's page and the picture is still there but they attached their logo/website to it. So luckily for those who deserve and need the accurate information about Ichthyosis it is still available. De Dehttps://www.blogger.com/profile/04523375694078425934noreply@blogger.comtag:blogger.com,1999:blog-6113641574975321616.post-76056126538555831912012-12-31T05:28:15.253-08:002012-12-31T05:28:15.253-08:00The pictures that are put up online by support gro...The pictures that are put up online by support groups, foundations and couragous parents are not for people who are too blind to care and just look for the next kick, out to shock and seeking attention. They are for parents, relatives care takers and caring people who look for information, understanding and support. And we are in desperate need of it. FIRST has withdrawn the picture of the lovely baby with scales on its face and visible ectropion, so thanks to this person there is now a little less information out there for people who need it.<br /> I cannot understand this. When people tell me how hard it is to look at a newborn with HI, EB and open wounds or anything else that impacts its appearance, think how hard it must be to be in this body, to breath through the pain, holding on to life with such unbelievable strength. It immendiatly changes your attitude from something self-centered to really looking at that baby and seeing beyond. It could have happened to each of us, being born with a condition like that, it can happen to each of us to give birth to a baby affected in this way or any other way. Our children are not objects of presentation to look and gawk at and mock and comment, they are little people that deserve the utmost respect.<br />Anonymoushttps://www.blogger.com/profile/17536739272395158713noreply@blogger.com