Category: Family Stories

January 5, 2023

Meet Gabe! January 2023 Happy New Year from Yaya Foundation for 4H Leukodystrophy! One of our goals for 2023 is to highlight the voices of our community each month. We…

November 27, 2022

This handsome guy hails from the United Kingdom and was diagnosed with 4H Leukodystrophy (4HL) less than one year ago. Hear from his amazing mom, Kerrie, about their journey with…

November 9, 2022

We were so excited to meet our first baby, Alexis Mariana, December 2017. She was born term and without complications. She met all her milestones rolling, sitting up, crawling, and walking all within the expected timeframes.

October 28, 2022

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…

September 16, 2022

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…

September 3, 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…

August 2, 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…

July 24, 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….

June 17, 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…

May 29, 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…

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…