2 steps forward, 1 step back: Lessons from a crisis

2 steps forward, 1 step back: Lessons from a crisis

Rylae-Ann, my daughter, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, an ultra-rare neurotransmitter disorder that disrupts the production of dopamine and serotonin. Before she received life-changing gene therapy at 18 months old, even basic developmental milestones felt like mountains. Since gene therapy, she’s made amazing strides in walking, talking, learning, and living a life full of promise. But even now, my wife, Ju…