Recent Posts
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Lucy home from ER. Abdominal Migraines with Visual Complications due to Autonomic Neuropathy
Lucy Szajnuk is four years old and lives in pain every single day. I was glad to hear that she did not have papilledema like Ava did in...
Headed to ER with Lucy Szajnuk
Lucy has had stomach pain for a week now. We just figured it was her normal stomach pain. However, she’s begging for a scope. She’s been screaming crying...
Rachel Nielsen’s Children’s Hospital of Wisconsin Journey
Recently, my parents and I had the opportunity to go to the Children’s Hospital of Wisconsin to see 2 specialists to hopefully get more answers and treatments for...
Gina’s “Living in a Diagnostic Odyssey, Times Four”
Very excited to share my journey through our diagnostic odyssey this week at the Illumina supported Satellite Symposium at the ACMG Annual Clinical Genetics Meeting in Tampa, FL! ...
Annette’s “Born in Fire: Bug’s Story”
When I was asked to share our story at the Utah Rare Symposium, the one where we find out how we created a very unique little person, not...
Gabe Valdez’s Rare Disease Day Speech and Harlie Made the Kearns High School Softball Team Today!
I believe we all have a purpose and a destiny to our lives . It may not happen on your timeline. But it will happen as long as you keep...
Jaderee-Eosinophilic Colitis
Jaderee Ann, 17. I have eosinophilic colitis. I live in the United States of America. I have, acid reflux, nausea, occasional vomiting and constant, uncontrollable diarrhea. It started...
Calen-Undiagnosed and Deletion/Duplication Chromosome 19
My name is Calen. I am 15 years old. My parent’s have many ridiculous nicknames for me, but I can best be described as fun loving fury. I...
Rachel- Undiagnosed with EOSINOPHILIC ESAPHAGITUS/COLITIS
Rachel, born in 1999. The youngest of four children. She has two brothers, a sister, and a sister-in-law. Her diagnoses are: EOE, EC, Gastroparesis, Delayed Motility, Orthostatic Intolerance, Neurogenic Bladder,...
Jazz to Host 30 Rare Children at Feb. 27 Game Kids to stand with Jazz, Nets during National Anthem
Jazz to Host 30 Rare Children at Feb. 27 Game Kids to stand with Jazz, Nets during National Anthem Media interested in interviews and access should contact Gina...