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How soft blocks became a cornerstone in our home

During a recent visit from another parent whose child has aromatic L-amino acid decarboxylase (AADC) deficiency, a small comment made my wife, Judy, and I pause. “Your house looks like a kid’s gym!” she said with a laugh. We looked around, and she was right. Soft blocks…

After years of practice, my daughter succeeded at riding a trike

For parents of children with rare diseases, progress is rarely linear. Each milestone is hard-earned, often built upon months or even years of trial, error, and perseverance. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This rare genetic disease affects neurotransmitter production, resulting…

The power of human touch supports the use of a walker

For most parents, watching their child take their first steps is a moment of joy and celebration. For my wife, Judy, and me, it was also a moment that followed countless hours of patience, experimentation, and teamwork. The journey to walking for our daughter, Rylae-Ann, wasn’t a straightforward path because…

After an earthquake, our family remains unshaken

Friday afternoon was winding down, and I was at my desk, feeling lightheaded. Or at least, I thought I was until I noticed my water bottle trembling. The ripples on the surface confirmed it wasn’t just fatigue from a long week. The floor beneath me swayed. It was an earthquake.

The shifting perspectives we’ve experienced with AADC deficiency

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, our world changed instantly. Like many parents receiving this life-altering news, my wife, Judy, and I were overwhelmed with questions, fears, and an urgent need for connection. We immediately sought out other families living with the…