Recent Posts
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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...
Stephanie Valdez: Harlie’s Juvenile dermatomyositis (JDM) update
Sorry it’s been such a long time for me to get an update out on Harlie. She’s been keeping me very busy these days! I was going through some of...
Michael-Undiagnosed
My name is Michael and I am 13 years old. (Diagnosis still not fully determined) I live in the United States of America. I’ve been fighting to...
Katie-MHE (multiple hereditary exostoses)
Hey Everyone, my name is Katie. Most people look at me and don’t think that anything is wrong with me. And as much as I wish that was...