Search results for ‘Harlie ’
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Rare Mom’s Letter to Hollywood: “Miracles from Heaven”
Dear Hollywood, As a mother of three rare and undiagnosed children and the Co-founder of the Rare & Undiagnosed Network (RUN), thank you for making the movie “Miracles...
Rare Teen Photo Shoot by Aware of Angels, Utah Rare and RUN!
The RARE TEEN PHOTO SHOOT was a HUGE success! Season Atwater, Aware of Angels, is such a talented photographer! Thank you to Angel Benson, Maddie Benson, Julie Jackson, Kristen Packard, Rebecca...
Not cool to Bully a Rare kid
Harlie Valdez received the following text last night from a teenage boy. “I hope you don’t get better. I hope you get sicker. It was better when you...
Primary Children’s Hospital feels like home. No more panic attacks.
Gina Szajnuk: Lucy had yet another procedure today. I used to have panic attacks when the children had to have sedation. I was so worried about them dying....
NBA Utah Jazz tickets go to Candice Moore. Friends of Stephanie and Gabe Valdez!
Justin and I offered 4 NBA Utah Jazz tickets to the first person to call me tonight. The game is tomorrow night. Candice works for Prestige Financial, Larry...
Thank you to everyone involved last Saturday! RUN Day Without Doctors Hosted by the National Ability Center! We have a ton of pictures to share!
Whole Genome Sequencing for the Szajnuks through the Utah Genome Project
Gina Szajnuk: “August 6, 2015, was a day I will never forget. My family had their blood drawn for whole genome sequencing. This is something we have been...
Stephanie Valdez shares today. When it rains, it pours.
Stephanie Valdez: “In these moments, it’s easy to focus on all of the things that have gone wrong. It’s easy to focus on the loss and the heartbreak...
Katie Nuffer’s update on living with MHE: Recovery has been very, very difficult.
Katie Nuffer: This recovery has been very, very difficult. But through all of the hard times, I’ve come out stronger and I learned not to take advantage of...
Stephanie Valdez: We are eternally grateful to all of you…
Stephanie Valdez: “Good evening, I just wanted to give an update on Harlie…. It’s been a busy week for her! She’s been working hard in therapy and it’s...