by Renee Hansen, Dakota’s mom Dakota Jade was born September 29, 1994. We did not know of her HPE when she was born. Days after she was born, we were told she had Semi Lobar Holoprosencephaly and if she did live, she would NOT have a life worth living. The doctors were WRONG. I made …
Today, March 6 has been designated as the awareness day for the annual “Spread the Word to End the Word” campaign. One of our HPE dads offered his thoughts in a Tweet. Cultural BlindSpot: You're not actually thinking of our kids when you say it. It's all we think about when we hear it pic.twitter.com/TjwBrrINwZ …
Please check out this new blog from Jenny, one of our HPE siblings. This blog is where Jenny writes letters to her brother, Andy, who passed away following an accident in 2008. Jenny and Andy had a sister named Jessie who died in 1988 with HPE. In this particular entry, Jenny tells Andy about meeting …
Some of our most-viewed blog entries came in 2010 when we shared “The 13 Days of Arthur“, written by Melissa Mouzin-Bennett, Arthur’s mom. While Arthur lived only 13 days, his impact continues to be felt in the lives of his family and the hearts of those who will read Melissa’s words. Please join with us …
By Michelle Alexander I can pick a time in my life when I felt as though the world had stopped turning. When time seemed to slow down to the point of hearing my own heart beat, loud and clear as if it were a base drum methodically beating inside of my ear. Then the feeling …
This photo montage was created by Bridget Eckert, in memory of her baby sister Paige. Thank you Bridget for Sharing the HoPE in HoloProsEncephaly!
Follow this link to read about a blog inspired by Billie-Jane, born with HPE. via Some background….
Hi my name is Molly Johnson, and I want to tell everyone a story about how my family, husband Jason, daughter Marissa and my mom Pat, all made it to the 2010 Conference on Holoprosencephaly in Maryland. We live in Washington state, and we had never met or talked with any family who has a …
I discovered this on the blog of an HPE mommy, Jill. I really liked it, and wanted to share it with our HoPE readers. If you would like to read other entries by Jill, Abbey’s mother, please click here. Maybe. . . We were supposed to meet the wrong people before meeting the right one …
This is the continuation of ‘The Thirteen Days of Arthur,’ a series of writings by Melissa Mouzin-Bennett, mom to Arthur Hancock… ********************* This is my last post for my “Thirteen Days of Arthur” project, tomorrow is Angel Day, the day our precious Arthur got his wings so he could play in heaven. You may be …