Recent Posts
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Ava Szajnuk: Going back to school for a rare child is different than a healthy child
Gina Szajnuk: Getting ready to go back to school for a rare child is a little different than a healthy child. When most families are just shopping at Target...
Lucy Szajnuk Update: No solid answers for infection and fever
Gina Szajnuk: Lucy’s blood and urine cultures came back negative today. We will not have a solid diagnoses for her 31,000 white blood cell count or her fever...
Lucy Szajnuk spending the night in observation at Primary Children’s
Gina Szajnuk: Lucy has had a fever the past three days. It has been as high as 106 degrees. Her white blood cell count this morning was 31,000...
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 some GOOD NEWS about Harlie today!
Stephanie Valdez: “So excited to finally post some good news… Harlie’s first appointment with orthopedic surgeon that placed screws in Harlie’s hip went great. He said it’s still...
Ava Szajnuk shares her first blog for RUN Kids
Ava Szajnuk: “Hi. My name is Ava. I am eight years old. I am rare and undiagnosed. My family is going through a very tough life because it’s...
Update on Grayson McClure. What can a mother do?!
Update from Kay McClure: “Hi Gina, Long days as you well know. Grayson convulses all day. Up to so much medicine in his port:( His exome sequencing was...
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...
Harlie Valdez is home from the hospital
We are happy to hear that Harlie, Stephanie and Gabe are home tonight. However, the road ahead for Harlie and her entire family is going to be a...
The Szajnuk family: Trying to accept our “normal”
July 13, 2015: Just like everyone else, our summer has gone by too fast. My mission this summer was to travel to see our families. We spent time...