Category: Perspectives


More children after HPE

One mom’s story of having more children after HPE

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2018 Conference Update

Author, Christopher de Vinck to deliver keynote address

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Pearl Joy Brown

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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Laughing Matters

I am often asked why I smile so much.  Often, these inquisitive ones are looking only at the difficulties in caring for a medically fragile child as a 24/7 job. I respond simply, “I can either cry about it or laugh…

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Embrace the Journey

Life with HPE is a journey

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Living with a special kid

Hello, I’m Virginia, I have a little girl, Violeta, (3 years) with HPE semilobar and we live in Buenos Aires. She’s a cutie and she doesn’t have health issues (touch wood). Of course she has delays. I write a blog about…

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Deepest Sympathy 

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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Reflections

One more year loaded with sweet recollections and cheerful times have passed. Wonderful people have made our year exceptionally uncommon, and I wish this continues forever. With each sweet person around, each minute is a unique event for us. I…

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…every perfect gift is from above

  James 1:17 “Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.” This journey is something I never saw coming. God chose…

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Can you define normal for me?

Can You Define Normal for Me? There’s More to His Life Than a Wheelchair September 2015 BY A.J. ZENDER On my first day home from college this past spring, bracing myself to live again with my parents as a 22-year-old…

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Quality of Life

By: Eric Brown Quality of life… What a phrase! Seems like we hear it a lot in the HoPE community. Sometimes it’s from doctors during that 20-week ultrasound, as they unpack what the future may likely hold. Or maybe it’s…

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What does HoPE look like?

What does HoPE look like? By: Kelli Aardal Goin Have you ever sat and thought about how important HoPE is in our lives? While it is possible to live without a lot of things, it is impossible to live without…

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Reality of HoPE

I shared this on my Facebook page today, and several have asked me to share it… I know that it can be uncomfortable to be my Facebook friend especially when I share updates on children who are sick or dying….

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The J.P. Story

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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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…

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