Archive for August, 2015
Rare and Undiagnosed Network (RUN) Day Without Doctors Hosted by the National Ability Center in Park City!
Dear Families, The National Ability Center has been generous to offer an afternoon of fun for our rare and undiagnosed families here in Utah. The activities will be...
Courageous Kid’s Invitational by Lionheart and BYU Men’s and Women’s Track Teams
Courageous Kid’s Invitational by Lionheart and BYU Men’s and Women’s Track Teams is a track and field night for children and their siblings with chronic medical conditions. Events...
Angela Metzger shares why she nominated RUN for a grant
“Why are you recommending this organization?” Angela Metzger: I have been involved in volunteer opportunities. Our family makes it a bi-yearly priority to do a large donation of...
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...