For a lot of my childhood, I was really hopeful that my doctors were going to figure out a diagnosis that would miraculously explain everything that was going on with me. I was young and didn't understand much about the world around me but what...
Eli is a very energetic and playful kid. He loves Superheroes! His favorite characters are the PJ Masks, and he loves to run around the house imitating them. Eli is the most loving and pure child. He LOVES hugs and kisses and asks for them...
Phoebe, now nearly 13 years old, was first evaluated by the UDN in April 2017. It’s been four years and, like for so many others, information has been slow in coming. The timeline is blurred in my memory in a way that is likely familiar...
Posted originally on Once Upon a Gene. Written by Effie Parks.I met Meghan Halley on the NORD Living Rare Living Stronger planning committee. She co-chairs the patient and family support group for the Undiagnosed Diseases Network. She's a Stanford research scholar and a mom to her...
Our first son Carson was born in 2011, and our diagnostic odyssey began just a few months later when we began to notice that his developmental milestones weren’t quite tracking with other kids his age. His movements seemed stiff and jerky, and he had trouble...
Finding Connection While UndiagnosedHaving an undiagnosed child with a disability leaves our family with many unanswered questions. What doctors specialize in our child’s care? How do we learn more about his condition? How do we map his future when there are no other maps for...
Like so many in the Rare and Undiagnosed Disease community, my story begins with… surprise. For some it was an unexpected pregnancy complication. For others, a missed milestone, some insidious decline, or a dramatic medical crisis. And in the blink of an eye our hopes...
/*! elementor - v3.11.1 - 15-02-2023 */ .elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=".svg"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block} From the age of 12, our son Mitchell lived each day knowing that an unknown disease was slowly robbing him of his hearing, leg movement and sensation, and his overall independence. He was receiving care...
As parents, all we want is for our kids to be happy and healthy. Unfortunately, that is not always how things turn out. My name is Mayra and I have three beautiful children. My oldest is 18, my middle child is 14, and my...
When my fourth child was born, a beautiful little girl named Felicity, I thought our family was complete. I had 4 beautiful children, a loving husband, and a happy successful life. I soon realized there was something amiss. My fairytale turned into every parent's worst...