Meet Abigail
(Written by Michelle Alexander) 13 years ago, I laid bleeding to death. I had just seen my only baby girl for the first time without the fuzziness of an ultrasound. She was beautiful. For 7 hours, I laid in recovery while my body threaten to give up. Thinking of the only real picture I had …
Meet Mary and Robert
(Submitted by Pat Wright) HPE is not a rare disorder in our immediate family, 50% of the children have HPE, and it has not prematurely taken the lives of the affected children, as one is 32-years old and the other is 23-years old. It has however taken us down a road of understanding and certainly …
Jacqui’s Playlist
Music Therapy for Jacqui written by Maury Smith One of the special things about my 17-year old daughter, Jacqueline, is the effect that music has on her. She loves most songs but there are a select few that cause her to make her sad face and start crying. When we were at a large family …
Meet Maddox
Maddox’s parents–Philip and Hailey Brewer–have shared Maddox’s story in honor of Holoprosencephaly Awareness Week. Check it out by clicking on the photo below . . .
Unsung Heroes
In our journey with HPE, there are many people who make a difference . . . but there are some who are quiet, unsung heroes. . . those whom we can never thank enough, yet we owe them the world.
March 10-16 is Holoprosencephaly Awareness Week!
March 10-16 has been designated as Holoprosencephaly Awareness Week! Over the course of the next several days, we would ask that you look for opportunities to share the HoPE you’ve found in Holoprosencephaly. Use your favorite social media accounts to reach others, and encourage those others to share the HoPE with their social media contacts. …
HoPE is on YouTube
This playlist features children with HPE. Sit back, relax, and prepare to smile as you see these beautiful miracles–Eva, Madelyn, Sammy, Marissa, Maeve, Cameron. Do you have a video you’d like to share with us, please comment below and include your link.
HPE Families, Start Your Engines!
The 1st Annual Holoprosencephaly Awareness Week kicks off tomorrow! We want to hear what you and your family and friends are doing to help raise awareness and educate others about this condition that has made such an impact on our lives. Professional race car driver Kyle Gimple is doing his part to raise awareness today! …