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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...
Ava Szajnuk’s 8th Birthday…remembering the day before she was born.
Happy 8th Birthday to our Ava. Gina’s Monologue to her unborn child a day before she was born, Ava. We pray for you to have many, many...
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...
Szajnuk’s family photo. June 2nd, 2013. What has changed since then?
Today is June 2nd, 2015. The family picture we always use is now two years old. What has changed in the last two years? Ava had no idea...
Much better than a hospital room!
Harlie Valdez and Ava Szajnuk enjoy a night out together: This past Saturday night was a great night at The National Ability Center’s Barn Party. For Harlie, it...
Harlie’s cousin: Keely Valdez’s Article on RUN for her school newspaper
Rare and Undiagnosed Network By Keely Valdez A once healthy child who may have done sports or stayed active, had a great sense of humor, or who was...
Stephanie Valdez on Harlie’s AMAZING progress!
Stephanie Valdez: “Just wanted to give everyone an update on Harlie’s AMAZING progress. She had a crazy, busy week last week with her schedule of therapies. She is...
Scripps Translational Science Institute (STSI) IDIOM: Idiopathic Diseases of Man
IDIOM: Idiopathic Diseases of Man At the Scripps Translational Science Institute (STSI) we are focused on an individualized approach to medicine. Currently, we are investigating rare and severe...
Betsy Kanarowski on POTS: Not rare, but rarely diagnosed
Betsy Kanarowski: “Gina asked me to write about the experience of my daughter, Alexa, being undiagnosed. I found myself putting this task off, not because I didn’t want...