Category: Family Stories

October 12, 2021

On a cold and blustery Chicago morning, I received a phone call that would change the fate of my family forever. Just a few days earlier, my son Joshua had…

October 12, 2021

Kora has always been a gift to her parents, starting from the moment of her arrival on December 25th. In her first few weeks of life, Kora struggled with acid…

October 12, 2021

May 17th, 2001 was a day that changed my life forever. Julia Marie Novak was born at 6:20pm, weighing seven pounds and eleven ounces. I remember thinking to myself that…

October 12, 2021

Learning To Soar With My Superhero Our story pivots around one precise moment—a phone call one afternoon in May 2016 almost four years ago. Every life event before, and every…

January 12, 2021

When Yaya was finally diagnosed with 4H Leukodystrophy, we were devastated and confused. Little information was available and it was impossible to understand what this disease meant for our daughter….

January 12, 2021

Meet Courtney and Nick and their two beautiful daughters, Jamie and Layla. In 2019, both Jamie and Layla were diagnosed with 4H Leukodystrophy (POLR3A). Jamie Jamie was born in 2016…

January 12, 2021

Asher is a beautiful, 7-year-old boy living with 4H Leukodystrophy, POLR3B type. His family, including an older sister, were thrilled to welcome him as a healthy, full-term baby. He was…

January 12, 2021

Long before I had ever heard of learning disabilities, attention deficit disorder, language impairments and emotional handicaps, I believed that young children learned what their parents taught them or what…