Life with Harlequin Ichthyosis: Ups and Downs in the First Year
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...
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Life With Harlequin Ichthyosis: Toddler Years
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...
View ArticleLife With Harlequin Ichthyosis: School Daze
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...
View ArticleA conversation with my 10-year old about harlequin ichthyosis
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...
View ArticleLife with Harlequin Ichthyosis: The Downs of Middle School
Today’s guest post is from Hunter, who is a teen affected personally with harlequin ichthyosis. She is featured on Extraordinary Humans: Skin, and The FIRST Story, and has been very active in spreading...
View ArticleLife with Harlequin Ichthyosis: High School
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...
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Life with Ichthyosis: A Harlequin-affected Mom’s Pregnancy
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...
View ArticleBaby With Harlequin Ichthyosis Born in Malawi; Media Frenzy Ensues
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...
View ArticleMalawi Baby with Harlequin Ichthyosis has Died
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...
View ArticleHarlequin-Affected Mom Has Baby!
More on this later, but I just wanted to report the great news that our friend Stephanie, who guest posted a few months ago about being the first woman ever to be pregnant while affected with harlequin...
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