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 living with a special kid (it’s in spanish: https://tenerunhijocondiscapacidad.wordpress.com/
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 inspiration touched all of our lives.”
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 wish everyone to have a year as incredible as you all are.Life is a progression …
…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 us over anyone else for this journey. It’s one that is something you never thought …
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 college graduate, I walked in and saw my dad, just sitting down after work. We …
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 shortly after delivery, when facts are finally being gathered and a diagnosis is given a …
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 HoPE. It wasn’t until Abbey was diagnosed with Holoprosencephaly that I truly understood that concept …
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. My deepest desire is that no parent would face a life-threatening diagnosis for his/her child …
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/
So very thankful . . .
We are thankful for each of the infants, children, and adults with HPE who have touched our hearts in countless ways–those born and unborn, living or deceased. We are thankful for our HPE parents. We all remember the moment that the word “holoprosencephaly” became a part of our vocabulary, and we are grateful to have …