Columns

On AADC Awareness Day, every story matters

Each year, AADC Awareness Day brings together families, advocates, researchers, and supporters from around the globe. It’s more than just a date on the calendar (this; it’s a reminder of the strength of our community and the importance of sharing our voices. We invite everyone to join…

Our tips to maintain a healthy marriage while caregiving

As a husband and father of a child with a rare disease, I’ve seen firsthand how being a caregiver can test a marriage. Our daughter, Rylae-Ann, has aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder that affects neurotransmitter production, causing hypotonia, developmental delays, and ongoing medical…

Navigating the anxiety of change while notching the improvements

As parents, Judy and I have learned that change can mean very different things to different children. For many, change brings excitement, curiosity, and growth. For our daughter, Rylae-Ann, change once meant fear, uncertainty, and overwhelming anxiety because of her rare neurotransmitter disease, aromatic l-amino acid decarboxylase…

A new appreciation of the yin and yang of life

I’ve never been someone who spends time looking back to psychoanalyze my past or delve deeply into philosophy. Instead, I’m typically looking forward, planning, and moving ahead. However, two significant events that unfolded in a matter of a few days recently forced me into deep reflection. They reminded me of…

A transformative July culminates in homeschooling success

For our family, July felt like running a marathon while juggling. The month involved a constant mix of motion, focus, and unpredictability. Each day brought challenges, milestones, and surprises. As parents of a child with the rare disease aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy,…