In March 2013, I went completely deaf in my right ear. I was laying on my bed and suddenly, it felt like someone had just… Continue reading Sudden Sensorineural Hearing Loss (SSHL) aka Sudden Deafness
In March 2013, I went completely deaf in my right ear. I was laying on my bed and suddenly, it felt like someone had just… Continue reading Sudden Sensorineural Hearing Loss (SSHL) aka Sudden Deafness
Our odyssey with rare diseases began in November 2014 when my then 14 year old, intelligent, and athletic son, Jaden, was diagnosed with Chiari Malformation.… Continue reading From Chiari to POTS to Lyme
I like to consider myself a fairly tough person. Raised by a large family, growing up helping my grandparents on the farm I grew up… Continue reading My Journey
Where do I start? My names Cortny and I was diagnosed with TSC before birth. Tuberous Sclerosis Complex is a rare multi-system genetic disease that causes… Continue reading My Journey through TSC (Tuberous Sclerosis Complex)
Living with this rare disease makes life outdoors very painful. It is like being allergic to the sunlight, which causes wounds and severe pain upon… Continue reading Erythropoietic Protoporphyria
Hi. My name is Emma, my daughter Maisie has a very rare blood disorder called Pyruvate Kinase Deficienency. Maisie is the 40th person in the… Continue reading Maisie Marsh – PYRUVATE KINASE DEFICIENCY
My formal education is in Speech Language Pathology, which my husband jokingly tells me is the exact reason our fourth child was born with an… Continue reading Sonya’s Story: A Journey with CDKL5
In 1994, my son Jacob was a 1 year old child recently diagnosed with rare Infant Leukemia (ALL). After chemotherapy and total body radiation we… Continue reading Long Journey
Johann Mikhail joined our family at 7:41 PM of March 14, 2015, and he was born at 38 weeks through cesarean section. He is a… Continue reading Hope for Life: Johann’s battle with Biliary Atresia