Oliver, Rare Disease

Feb 28, 2023

“Our life with Oliver was rocky from the start. We knew some of Oliver’s possible challenges before he was born; however, it didn’t make anything any easier to experience. Oliver was born prematurely, and at two-days-old, he experienced his first medical...

Tristan, Rare Disease

Feb 28, 2023

“Tristan was diagnosed with Eosinophillic Esophagitis four years ago. Eosinophillic Esophagitis (EoE) represents a chronic, immune/antigen-mediated esophageal inflammatory disease associated with esophageal dysfunction resulting from severe inflammation. Before...

Mayson, Rare Disease

Feb 28, 2023

“Mayson was born five weeks premature on October 11, 2021. We had known that he was going to be born a little extra unique since my 20-week anatomy scan. When the doctors first told us about Mayson’s arm and the things that it might be, we automatically did so much...

Marleigh: Rare Disease

Feb 28, 2023

“Marleigh’s journey with a rare disease started when she was diagnosed with FPIES in February 2021 at 6 months old. FPIES stands for Food Protein Induced Enterocolitis Syndrome. FPIES isn’t your typical food allergy, it’s a non-IgE-mediated immune...

Courageous Clay

Feb 17, 2023

February is American Heart Month, but it is also home to Congenital Heart Defect (CHD) Awareness Week: February 7-14.  Congenital Heart Defects (CHD) are abnormalities in the heart that happen before a child is born, and CHDs are the most common type of birth...