Category: Child of HoPE
By: Kelli Aardal Goin Words she never got to say, However communicated in a big way. Let you know when something was wrong, Loved to listen to her favorite song. Her twin sister was her very best friend, The one…
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By: Kelli Aardal Goin The news that no parent wants to hear, Their child has a terminal illness and isn’t guaranteed a year. The hospital visits become a common affair, Their child’s story they are often asked to share. Stress…
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By Nikki Tuma Here is a little story about Kreighton that got us to where we are today : Kreighton was born July 25, 2013.. when we found out we were pregnant with him, there were no abnormalities that arose…
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Last week, Pearl Joy Brown’s dad, Eric Brown, was asked to speak at a conference in Washington, DC. Thank you, Eric, for sharing your humble spirit, your sincere and heartfelt words, and your beautiful photos.
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Chance Urschel obituary “On behalf of all HPE families past and present, Families for HoPE extends its deepest condolences, love and admiration to the family of Chance Urschel. Chance is the child who brought HoPE to the hopeless, and his…
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Category: Child of HoPE, Grief, Inspiration, Milestones, Perspectives
Tags: beautiful, Carter Centers, chance, chance urschel, condolences, encouragement, grief, HoPE, sympathy
Hope is a word I never thought too much about, just a word without much meaning. But since 2013 it is a word with a whole lot of meaning, but then written as HoPE. On July 7th 2013…
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This is a great blog written by a dad about one of our HPE families in Florida. http://navigatinglifesdetours.com/2014/08/30/the-j-p-story-uncertainty-before-birth/
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Category: Child of HoPE, Inspiration, Perspectives
Tags: abortion, birthday, children with special needs, disabilities, family, florida hospital for children, holoprosencephaly, special needs children, the j.p. story
(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…
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(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…
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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…
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Category: Child of HoPE, Guest Authors, Holoprosencephaly Awareness Week 2014, Inspiration, Leslie
Tags: dionne, happy, jacqueline, jacqui, music, playlist, songs, springsteen, therapy, warwick
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 . . .
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Category: Child of HoPE, Holoprosencephaly Awareness Week 2014, Inspiration, Leslie, Perspectives
Tags: #holoprosencephaly #hope, #sharingHoPE, awareness, brewer, maddox, philip, riley hospital
Miss Charlie Dawn Rinard
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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…
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Category: Child of HoPE, Grief, Guest Authors, Inspiration, Perspectives
Tags: Barney, dakota, grief, hawaii, holoprosencephaly, HoPE, HPE, journey, renee
Families for HoPE, Inc.