Tag: holoprosencephaly
(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 …
(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 …
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. …
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 …
Families for HoPE President Ed Tierney (Maeve’s dad) reports on the fishing tournament he hosted as a fundraiser benefiting Families for HoPE. Thank you so very much to you and your hard-working team of volunteers. Great job, Ed!
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
Have you created a wish list for the Mothers Day Madness fundraiser? You can use your Pinterest account to pin your favorites items, then share a link to your Pinterest board with your family and friends so that they know what you would want for Mother’s Day, birthdays, holidays. Use these links to visit the …
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
Tag: holoprosencephaly
Meet Abigail
Posted: March 14, 2014 by Leslie, Sammy's mom
(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 …
Category: Guest Authors, Holoprosencephaly Awareness Week Tags: #sharingHoPE, abigail, awareness, holoprosencephaly, HoPE
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
March 10-16 is Holoprosencephaly Awareness Week!
Posted: March 10, 2014 by Leslie, Sammy's mom
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. …
Category: Holoprosencephaly Awareness Week Tags: #sharingHoPE, awareness, holoprosencephaly, ripple, social media
#GivingTuesday The countdown is on!
Posted: November 27, 2013 by Leslie, Sammy's mom
Category: #GivingTuesday, Fundraising Tags: #givingtuesday, #sharingHoPE, holoprosencephaly
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
Fishing for HoPE 2013
Posted: October 19, 2013 by Leslie, Sammy's mom
Families for HoPE President Ed Tierney (Maeve’s dad) reports on the fishing tournament he hosted as a fundraiser benefiting Families for HoPE. Thank you so very much to you and your hard-working team of volunteers. Great job, Ed!
Category: Fundraising, Guest Authors Tags: awareness, ed, fishing for hope, fundraiser, holoprosencephaly, maeve, tierney, tournament
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
Do you have a wish list?
Posted: March 30, 2013 by Leslie, Sammy's mom
Have you created a wish list for the Mothers Day Madness fundraiser? You can use your Pinterest account to pin your favorites items, then share a link to your Pinterest board with your family and friends so that they know what you would want for Mother’s Day, birthdays, holidays. Use these links to visit the …
Category: Fundraising Tags: fundraiser, holoprosencephaly, pinterest
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