Our journey with ALD began when our son, Julian, was diagnosed with cerebral adrenoleukodystrophy (ALD) in November 2014. We had no reason to suspect it. Daughters dominated the closest branches of our family tree. Only after his diagnosis did older relatives make the connection to distant male cousins who had died young and unexpectedly. By the time an MRI confirmed it, it was too late to intervene.

Julian was funny, affectionate, fiercely loyal to his sisters, and deeply loved by everyone who knew him. He had fantastic hair and a winning smile. After about 11 months of progressive decline, he lost his battle with c-ALD. Naturally we were heartbroken.

In the midst of our grief, we became passionate advocates for newborn screening for ALD, believing that other families deserved the chance for earlier diagnosis and treatment. We worked to bring awareness to this devastating disease and to support efforts that would help identify affected children before symptoms appeared. In 2016 the Texas Department of Health and Human Services approved the addition of ALD to the newborn screener for babies born in Texas. There was no funding to implement this for another 2 years so we continued to advocate for funding, writing letters and speaking to local politicians when we could. Finally, the first lab opened in 2019.

Today, we are grateful that newborn screening is making a difference. Now, families who receive a diagnosis through newborn screening have time to learn about ALD, address symptoms and prepare for a potential bone marrow transplant or gene therapy, which can halt progression of ALD. While we wish every day that Julian was still with us, we are proud that his legacy lives on through hope for future boys and girls.

Our family continues to honor Julian's memory by supporting ALD research, advocacy, and the mission to find better treatments and, ultimately, a cure.

Forever loved. Forever missed. Forever part of our story.

Kurt, Jenna, Cas, and Quin