Austin was born in 2020 and was diagnosed with ALD via newborn screening. Had his parents not known about this shortly after birth, they would not have Austin’s beautiful baby sister, Oakley Faith.

His amazing parents, Chelsea and Chad, ensured they took all the necessary steps to connect with a specialist in Minneapolis and understand what treatment options were available to their son.

A diagnosis of ALD can make family planning decisions extremely difficult. IVF is a wonderful option for ALD parents who wish to grow their family and can potentially save the lives of affected children should they need to proceed to a stem cell transplant in the future.

In 2022, Austin’s baby sister, Oakley, was born. She is a 100% perfect HLA match to Austin and is free of ALD. When this beautiful little girl was born, all seemed right in the world for this family. Six weeks later, the Herre family received the devastating news that Austin had B-Cell Acute Lymphoblastic Leukemia. Although a bone marrow transplant is not the first course of treatment, it is an option if he were to relapse later in life.

ALD, combined with cancer, is an unrelenting battle that no one should have to face! The knowledge about ALD allows this family to receive the most informed care possible.

What does newborn screening mean for the Herre family?

It means LIFE or DEATH!