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Ava Szajnuk and Harlie Valdez: We all said prayers today.
July 12, 2015: Ava and Harlie met last October on the court of the NBA Utah Jazz. We watched this amazing family, the Valezs, in awe of being...
Harlie Valdez is out of surgery. Thank you for your prayers.
Harlie is out of surgery. Long screws are now in Harlie’s hip. We need to pray that the screws do not cause more fractures in her bones. They...
Harlie Valdez falls and fractures her hip. Surgery today. Please pray.
Stephanie texted late last night to let us know that Harlie fell. Unfortunately, she suffered tremendously due to her very fragile bones from all of the medications she...
The House of Representatives APPROVES the 21st Century Cures Initiative with a vote of 344-77
The House of Representatives APPROVES the 21st Century Cures Initiative with a vote of 344-77 Posted on Friday, July 10, 2015 · RDLA applauds the House for approving...
Action ALERT: Urge Congress to Vote YES on 21st Century Cures Act
Take Action Action ALERT: Urge Congress to Vote YES on 21st Century Cures Act Calling all Rare Disease Advocates! Take Action: Link to Site This week the House...
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...
Katie Petersen: My Journey through the Medical Odyssey.
Katie Petersen: My Journey through the Medical Odyssey. My medical problems started around age 16 when I went to my pediatrician with complaints of a rapid heart rate...
Harlie Valdez goes home!!!! Best day ever!!!!
Stephanie Valdez: “I never thought this day would come… They are finally releasing us from the hospital!!! No beeping all night, no sleeping on a small couch or...
Update on Harlie Valdez and her new medicine, Tacrolimus.
Stephanie Valdez: “Update on Harlie. After deciding to try the new medicine Tacrolimus, they are struggling to get the dosage right. They want us to be in the...
In the middle of Iowa, Ava shares her experience with Heaven
Blog from 2015: Ava’s four cranial surgeries were exactly two years ago this week. In 2013, her first cranial surgery was in June. Three more surgeries followed over...