Archive for June, 2015
Page 1 of 2
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...
Stephanie Valdez’s Update on Harlie: New medicine and what a great weekend!
Stephanie Valdez: “Update on Harlie.. We have decided to try a new drug treatment called tacrolimus.. She will start it today along with her other treatments on Mondays...
Rare Disease Community Rallies for Infant with Rare Disorder
We are sharing this story here on RUN because we hope that it shows other undiagnosed families that there is a small but very active community of citizens,...
Stephanie Valdez’s Question re: Harlie: Has anyone had any experience with Cytoxan or Tacrolimus?
Stephanie Valdez: “I just wanted to give everyone an update on Harlie’s MRI. Our rheumatologist came in and talked to us yesterday. He wants us to consider a...
Ava Szajnuk defies the odds and rides a horse for her 8th birthday present.
Gina Szajnuk: “Ever since Ava could talk, she wanted to ride a horse. As a very anxious mother, I was terrified of the thought of Ava riding a...
Tute Genomics: No Child Left Undiagnosed
No Child Left Undiagnosed “We envision a world where every child and every patient who requires a diagnosis receives one, in time for it to make a difference.” Reid...
Grayson’s Story: We live in the USA where we would have never thought getting care would have been so difficult
Kay McClure:“Grayson, a native Memphian, has been sick since just before his 12th birthday, and he turned 22 years of age in January, 2015. He experienced a normal...
Katie Nuffer’s Update on living with MHE
Katie Nuffer: “Hey Everyone. It’s been almost 8 months since I broke my arm. Things are still pretty hard, and painful… However I can go out and push through...