As parents of a child with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I have learned that balance is something we must constantly work to find. Between therapies, school, and everyday responsibilities, our family’s schedule can fill up quickly, leaving little room to breathe.
When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, we quickly learned that caregiving required us to wear many hats. My wife, Judy, and I stepped into the role of nurse, teacher, therapist, advocate, and researcher. Like many caregiving parents, we often felt…
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…
For many children with aromatic l-amino acid decarboxylase (AADC) deficiency, gene therapy holds opportunities for the future. It’s a chance for them to move, speak, and experience life in ways that once seemed impossible. I have often written about the life-changing benefits of gene…
When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, the first thing the internet told us was devastating: She would die. At that moment, my wife, Judy, and I had two choices: We could accept those words as truth, or we could fight…
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…
Starting something new is never easy for a child with aromatic l-amino acid decarboxylase (AADC) deficiency, especially when it involves doctors, clinics, and the unknown. Two weeks ago, we had a false start at a new physical therapy clinic. Anxiety got the best of…
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…
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…
When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I felt utterly lost. The diagnosis was ultrarare, the prognosis uncertain, and the treatments limited. There was no road map or guide for this new journey we never imagined we…
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