The Unique Life of Mr.B: Searching for a Diagnosis


This is the ongoing journey of our youngest son, Braeden (Mr.B) who came into this world two months early on November 7, 2011 suffering from Hydrops and Supraventricular tachycardia. He spent his first seven and a half months at Alberta Children’s Hospital and continues to spend […]

“Especially Beautiful” Models Raise Awareness of Rare Disease


Special needs models will be the focal point of the 1st Annual ‘Especially Beautiful Fashion Show’ in Orange County. These models, all special needs children and teens, are joining their friends Cali, 15, and Ryann, 4, Spooner in raising visibility about World Rare Disease Day. […]

Family Rallies for Girl Suffering from Undiagnosed Brain Disorder


“I’m a rock star!” shouts Ellie Schleyer, striking a pose as part of an impromptu runway show. The 11-year-old spins and dances down the staircase and through the kitchen of her family’s home in Fairfax Station, bursting with enthusiasm for fashion, unicorns, and glitter. For […]

Creating Hope for Undiagnosed Patients (SirenSong)


Most rare disease patients spend a good portion of their lives coping with a condition that is either undiagnosed or misdiagnosed. Some of them die of a disease that has yet to be named. Heather Long’s son, Cal, was one of them. After years of […]

Misdiagnosis after Misdiagnosis, Karlee and Family Continue Search


I’m the single mother of two children, Karlee is my four-year old girl and she’s been showing symptoms many doctors have found difficult to name. When Karlee was 1 1/2, we were out at a lake and she just… stopped breathing. The doctor thought it […]

Undiagnosed: Amy Morgan’s Story


Our daughter, Amy Rochelle Morgan was born in July of 1977. That makes her 36 years old today. Her father, Kevin, and I (my name is Lynnie) were ecstatic when she arrived as a healthy 8lb 9oz baby girl, right on her due date. My […]

A Child’s Rare and Undiagnosed Illness: Listen in Today at 6:00PM

Heather Long

For most of us, when we go to the doctor with symptoms, we are diagnosed and treated.  Imagine going to the doctor and being told there were no answers as to why the symptoms were occurring.  Then imagine, this is your child and all the […]