Results for "light up for rare"

My name is Lilly and my son was Hunter. I will be telling this story because Hunter passed away on Sept 1,2012 from Bone Marrow complications.… Continue reading Such A Long Journey For Such A Short Time

After struggling many years with an unknown autoimmune disease, tons of misdiagnosis, and thousands of dollars spent on treating symptoms, I was finally diagnosed with… Continue reading The Disguised Monster Within

I went to the ER complaining of chest pains and an hour later a doctor came to me and said “The CT scan revealed you… Continue reading Finding Hope and Regaining Power After Diagnosis

My beautiful son was born with multiple hereditary extososes. His sister was his guiding light and supporter through his young life of surgery. Her crushing… Continue reading My beautiful children

Hello, My name is Maria, I am 32 years old , I have Cushing’s Syndrome and this is my story. I am from Bogota, Colombia,… Continue reading Living with Cushing’s Syndrome

Visual Snow: My Story Posted on June 25, 2014 by Jackie This article is intended to spread awareness about a rare condition called Visual Snow.… Continue reading Visual Snow: My Story

In 2010 I gave birth to a beautiful baby girl but what I didn’t realize is just how much my life would change. When you… Continue reading Your battle is my battle

At just 3 yrs old our daughter Annabelle Jane Griffin ‘AJ’ was diagnosed with a very rare medical condition Vascular Ehlers-Danlos Syndrome, it is life… Continue reading Annabelles Challenge

Had it not been for the quick thinking of my husband, I am not sure what might have eventually happened to me. Already having been… Continue reading Be Proactive