Our gene therapy milestone honors all those fighting AADC deficiency
On Nov. 13, we celebrated our daughter's seventh 'Reborn Day'
Within the community of people with aromatic L-amino acid decarboxylase (AADC) deficiency, we refer to the day of gene therapy as “Reborn Day” because it truly marks a new beginning.
Our family celebrated our daughter Rylae-Ann’s seventh Reborn Day on Nov. 13. For my wife, Judy, and me, it was not only a celebration of how far she has come, but also a moment to reflect on how much our lives have changed since that day, seven years ago.
Before gene therapy, every day felt like an uphill, impossible climb. Judy and I spent countless hours researching, contacting specialists, and searching for answers. Rylae-Ann struggled to move, eat, and communicate. We often felt powerless, holding on to hope even when progress seemed out of reach. Yet, we refused to give up.
On Nov. 13, 2019, Rylae-Ann underwent life-changing gene therapy during a clinical trial in Taiwan. (Photo courtesy of Richard E. Poulin III)
When the time came for her gene therapy, we knew it was a leap of faith. We didn’t know what the future would hold, but we believed it was the right choice. I still remember watching the video call as Judy held Rylae-Ann’s tiny hand before she went into the operating room.
It was one of the hardest moments of our lives, but also one filled with quiet strength. We had come so far to reach that point, and we trusted that hope would lead us the rest of the way.
The changes that followed were gradual, but profound. Slowly, Rylae-Ann began to move with more control. Her eyes became more focused. She smiled more. Every small achievement felt like a miracle. With time, she learned to sit, stand, and eventually walk. She began expressing herself in ways we never thought possible.
Rebirth for children and caregivers
This year, as we marked Rylae-Ann’s seventh Reborn Day, Judy and I found ourselves overwhelmed with gratitude. We looked back at old videos and photos, remembering the long nights and uncertain days that led us here. Then we looked at Rylae-Ann running, laughing, and full of life. It felt like witnessing a dream come true.
Seven years after having gene therapy, Rylae-Ann continues to make improvements and is living life to the fullest. (Photo by Richard E. Poulin III)
Rylae-Ann has grown into a bright, kind, and determined little girl. She faces challenges, especially with anxiety and emotional regulation, but she continues to move forward with courage. Her laughter fills our home, her curiosity drives her learning, and her compassion reminds us of the strength that can come from struggle.
Celebrating her Reborn Day wasn’t just about one child’s progress. It was about the power of science, perseverance, and community. It was about honoring every family still waiting for their own Reborn Day and recognizing the doctors, researchers, and advocates who made treatments like this possible.
Looking back over the past seven years, I realized how much this journey changed us. It taught us to be patient when progress seemed slow, to be grateful for every small step forward, and to stay hopeful even when the future felt uncertain. Most of all, it reminded us that love and determination can turn fear into faith.
As we blew out candles and watched Rylae-Ann dance around the room, I couldn’t help but think about the word “reborn.” It doesn’t just describe what happened to her, but it also explains what happened to all of us. We learned to see life differently, to appreciate each moment, and to never take ordinary days for granted.
Seven years ago, Rylae-Ann was given a second chance at life. On her Reborn Day in 2025, we celebrated both her journey and the hope she represents for so many others.
Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.
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