Tag: HPE
(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 …
Well, the wait is over! Grab your family calendar and save the dates! We want to invite you and your family to Dallas, Texas on October 2-4, 2014 for our 2014 Conference: “HoPE in the Heart of Texas”. The conference is a collaboration between Families for HoPE and the Carter Centers for Brain Research in …
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 …
Category: Child of HoPE, Grief, Guest Authors, Inspiration, Perspectives Tags: Barney, dakota, grief, hawaii, holoprosencephaly, HoPE, HPE, journey, renee
Baby Lael Faith Shoemaker is one of the newest additions to our HPE family. Click here to learn more about Lael Faith and her family.
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.
Category: Child of HoPE, Holoprosencephaly Awareness Week, Inspiration Tags: cameron, eva, holoprosencephaly, HPE, madelyn, maeve, Marissa, sammy, video, youtube
FLASHBACK FRIDAY – July 2, 2006 Making the most of every day: Family copies with newborn’s terminal diagnosis Odessa American, Odessa, Texas Article published July 2, 2006 By Elizabeth York Birth is a time of celebration, new life and wonder. But one Odessa family is facing the terrible combination of having a newborn diagnosed with …
FLASHBACK FRIDAY – From June 2008 The Steele family of Richmond, Indiana, knows better than most just how full of God’s love and promise the Easter season can be. Their reminder didn’t appear in an Easter basket, though. It came in the form of twins! Rachel Steele, this month’s Child of HoPE, and her twin …
FLASHBACK FRIDAY – From November 2007 One day at a time. Those five little words have served Kim and Gloria Morris very well in their role as parents. Already the parents of 10 year-old Josh, Kim and Gloria added a baby girl to their family with the birth of Tara Lynn Morris on December 30, …
FLASHBACK FRIDAY – from June 2007 Michael Bangit III was born December 21, 2000 and has been diagnosed with semi-lobar holoprosencephaly. Michael’s father was killed in a logging accident when Michael was only six months old. Today, he lives with his mother, Candace Mobley, and his grandparents in North Carolina. Michael is described by his …
Tag: HPE
June 14 – Racing for HoPE 2014
Posted: June 14, 2014 by Leslie, Sammy's mom
Category: Racing for HoPE Tags: #holoprosencephaly #hope, HPE, Josh Timmerman, racing for HoPE, Walk
Meet Mary and Robert
Posted: March 14, 2014 by Leslie, Sammy's mom
(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 …
Category: Guest Authors, Holoprosencephaly Awareness Week Tags: #sharingHoPE, awareness, holoprosencephaly, HPE, wright
Save the Date for the 2014 Family Conference on HPE
Posted: November 1, 2013 by Leslie, Sammy's mom
Well, the wait is over! Grab your family calendar and save the dates! We want to invite you and your family to Dallas, Texas on October 2-4, 2014 for our 2014 Conference: “HoPE in the Heart of Texas”. The conference is a collaboration between Families for HoPE and the Carter Centers for Brain Research in …
Category: HPE Conference Tags: Carter Centers, childrens hospital, conference, dallas, holoprosencephaly, HPE, save the date, scottish rite, texas
My Journey
Posted: April 22, 2013 by Leslie, Sammy's mom
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 …
Category: Child of HoPE, Grief, Guest Authors, Inspiration, Perspectives Tags: Barney, dakota, grief, hawaii, holoprosencephaly, HoPE, HPE, journey, renee
Welcome little one
Posted: March 28, 2013 by Leslie, Sammy's mom
Baby Lael Faith Shoemaker is one of the newest additions to our HPE family. Click here to learn more about Lael Faith and her family.
Category: Birthdays, Child of HoPE Tags: holoprosencephaly, HoPE, HPE, lael faith, shoemaker
HoPE is on YouTube
Posted: March 14, 2013 by Leslie, Sammy's mom
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.
Category: Child of HoPE, Holoprosencephaly Awareness Week, Inspiration Tags: cameron, eva, holoprosencephaly, HPE, madelyn, maeve, Marissa, sammy, video, youtube
Harley Renee Tucker
Posted: March 1, 2013 by Leslie, Sammy's mom
FLASHBACK FRIDAY – July 2, 2006 Making the most of every day: Family copies with newborn’s terminal diagnosis Odessa American, Odessa, Texas Article published July 2, 2006 By Elizabeth York Birth is a time of celebration, new life and wonder. But one Odessa family is facing the terrible combination of having a newborn diagnosed with …
Category: Inspiration Tags: harley, holoprosencephaly, HoPE, HPE, odessa, tucker
Rachel Steele
Posted: February 23, 2013 by Leslie, Sammy's mom
FLASHBACK FRIDAY – From June 2008 The Steele family of Richmond, Indiana, knows better than most just how full of God’s love and promise the Easter season can be. Their reminder didn’t appear in an Easter basket, though. It came in the form of twins! Rachel Steele, this month’s Child of HoPE, and her twin …
Category: Child of HoPE Tags: holoprosencephaly, HoPE, HPE, rachel steele, richmond, Riley, twins
Tara Lynn Morris
Posted: February 15, 2013 by Leslie, Sammy's mom
FLASHBACK FRIDAY – From November 2007 One day at a time. Those five little words have served Kim and Gloria Morris very well in their role as parents. Already the parents of 10 year-old Josh, Kim and Gloria added a baby girl to their family with the birth of Tara Lynn Morris on December 30, …
Category: Child of HoPE, Inspiration Tags: gloria, holoprosencephaly, HPE, kim, morris, tara, wisconsin
Michael Bangit, III
Posted: February 8, 2013 by Leslie, Sammy's mom
FLASHBACK FRIDAY – from June 2007 Michael Bangit III was born December 21, 2000 and has been diagnosed with semi-lobar holoprosencephaly. Michael’s father was killed in a logging accident when Michael was only six months old. Today, he lives with his mother, Candace Mobley, and his grandparents in North Carolina. Michael is described by his …
Category: Child of HoPE, Inspiration Tags: bangit, holoprosencephaly, HPE, michael