March 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.

February 7, 2022

On February 6th, the Yaya Foundation hosted the first of six Zoom Hangouts for #4HLFamilies in 2022! In these bi-monthly calls, anyone and everyone impacted by 4H Leukodystrophy is invited…

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….