Archive for February, 2016
Page 2 of 2
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...
Stephen Jenkins shares about his two sons and cystinosis
Samuel and Lars were born with a rare genetic disease called cystinosis. It is an autosomal recessive lysosomal storage disease, and it leads to progressive kidney failure, corneal disease,...
Katie-Cutaneous Mastocytosis
Katie-15 years old Diagnosis-Mastocytosis Country-USA My name is Katie. I am 15 ½ years old and I live in Utah. I have a rare disease called Mastocytosis. I was...
Preston-Eosinophilic Colitis
Preston has spent all of his 15 years of life living in beautiful Utah with his two older sisters and one older brother. Preston has Eosinophilic Colitis, one...
Aliyah-VACTERL Assoc., Gastroparesis, Chronic Lung Disease
Aliyah is 14 when she was born she weighed 3lb 10oz. She has the VCTE of the VACTERL Association (V) = vertebral abnormalities (A) = anal atresia (C)...
Rachel Nielsen: “Daughter of a King.”
I’ve always had problems growing up. When I was born, I was 6.5 lbs. When I was 4 years old, I was still the size of an 18...
Necia Munro shares her journey with her daughter, Hallie
Necia Munro: When Hallie was born and her doctor told me she was just a “little peanut”, I knew instinctively that something was wrong. It took us many...
Meet our Son Bridger Trey Penney
Chelsea Penney: There are hardly words to describe that moment, after nine months of planning and preparing, you finally get to meet and hold that precious baby. Then...
RAREcast: Jazzed in Utah for World Rare Disease Day
What an honor to be interviewed by Daniel Levine! Thank you to the RARE Daily by Global Genes! You can access it at RAREcast: Jazzed in Utah for World...