Recent Posts
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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...
Harlie-Juvenile Dermamyositis
Harlie is a 14 year old girl who has lived a very active life, playing softball, basketball, and other sports- right up until August 2014. When she started having...
Michael-undiagnosed-with multiple diagnosis including dysautonomia…
Hello, my name is Michael. I am 13 years old. I have dysautonomia, POTS (Postural Orthostatic Tachycardic Syndrome), MCAD (Mast Cell Activation Disease), apnea (central, obstructive, and mixed),...
Hailey-Undiagnosed with Migraines & POTS: Postural Orthostatic Tachycardia Syndrome &
I am the mother of three girls. My middle daughter, Hailey, has always been very athletic- climbing at a young age, great coordination and always wanting to try different...
Ricki-Neurofibromatosis Type 2
Hi my name is Ricki. You look at me and probably see just another normal face in a normal crowd. But there is more than what meets the...