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Today we are pleased to present a guest post from Kyriaki, a friend from Down Under who we met online. What is it with articulate Australians advocating about ichthyosis online? —————————————- I grew up with people judging me for my looks, especially in summer. Not just when I was older and judged by my peers, [...] Malawi media is now reporting that the baby born last week affected with harlequin ichthyosis has died. (We wrote on Monday about the baby and the media coverage.) Although the news of the baby’s passing was just published today (Wednesday), the story says that the baby died over the weekend, shortly after being transferred to [...] Last week, the Nyasa Times reported that in the small lakeside town of Salima, Malawi (Africa), a baby was born, apparently affected with harlequin ichthyosis, the most severe form of autosomal congenital recessive ichthyosis (ARCI). Brenna’s mom shared the original article with me over the weekend, and since then we have become aware of followup [...] Our guest today is Stephanie. She is the author of the blog “With Faith That Will Move Anything” and the YouTube vlog of the same name. ——————————————- On April 11, 2012, I married the man of my dreams. He was cute as could be with dimples that made my heart melt and gorgeous brown eyes. [...] Hunter is back with us today, sharing her experiences in high school. —————————————- After my middle school experience, I went into high school very guarded and careful. I always kept a barrier up against new people because I was afraid of having them bully me. Ninth grade year was by far the hardest of all [...] Since we spent many hours of our Christmas and New Years’ holiday writing about and responding to “the picture“, it was only natural that our kids asked us some questions. I thought that sharing some of their questions and our answers would help others better understand the facts and our perspective. Rachel, what’s that picture [...] Our guest post today is by Shannon, mom to Lauren. Lauren is 8 years old and a Brownie Girl Scout. ————– “If there were no schools to take the children away from home part of the time, the insane asylums would be filled with mothers.” – Edgar W. Howe After three years of Early Intervention [...] Our guest post today is by De De, mom to Evan and author of the Our Young Warrior Evan blog. Evan is 2.5 years old. ——— The toddler years I had envisioned for Evan are not what we are experiencing right now. Even with all the challenges he faced with his skin and as a [...] Our guest poster today is Courtney, mom to Brenna and the author of the Blessed By Brenna blog. Brenna is 11 months old. ———– When Brenna was first born, each day felt like its own year. The hours dragged and the days dragged as we watched her fight to stay alive, to grow little [...] |
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