Our holiday trip is a symbol of our daughter’s journey after gene therapy
We are marking another milestone in Rylae-Ann's progress
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Our family is packing our suitcases once again, but this time it feels different. Instead of bracing ourselves for a long journey ahead, Judy, my wife, and I find our excitement rising each day as we prepare for a short 10-day trip back to the U.S.
We’ve been looking forward to this visit for months, not only because we miss our family, but because this trip marks another milestone in our daughter’s progress.
Because of Rylae-Ann’s rare disease, aromatic l-amino acid decarboxylase (AADC) deficiency, traveling used to be a full-scale operation. Before every flight, Judy and I would plan, rehearse, and mentally prepare as if we were heading into battle. Transit meant tension. We worried about how Rylae-Ann would respond to new environments, shifts in routine, and the unpredictable rhythm of airports. The journey demanded patience, strength, and emotional endurance.
The joy of travel
But like many challenges she has faced, Rylae-Ann has grown well beyond those earlier days. Now, seven years after gene therapy, she does not frown when she sees us pulling out suitcases, but beams with a bright, broad smile. To her, travel means adventure and discovery. Knowing this has transformed our own outlook and turned the entire process into something joyful.
The excitement grows even more when we imagine her reunion with family in Florida. They have been counting down the days and sending messages filled with anticipation. Everyone is eager to shower her with gifts and affection.
Rylae-Ann poses in front of a Christmas tree in Thailand before flying to the U.S. to be with family. (Photo by Richard E. Poulin III)
For them, 10 days will be far too short, but they are determined to make every minute count. Homes in the Sunshine State may not have snow-covered yards or icicles hanging from rooftops, but the spirit of Christmas shines strong. Decorations sparkle across the neighborhood, lights dance along palm trees, and the warmth of family somehow makes up for the lack of winter’s chill.
Rylae-Ann especially looks forward to the cool weather. Growing up in Thailand has made warmth her everyday companion. To her, cold wind is a mystery, almost magical, like an unexpected visitor tapping at the window. Judy and I have become acclimated to Thailand’s steady heat. We are not exactly eager for lower temperatures and find ourselves bundling up sooner than most Floridians would. Still, to watch Rylae-Ann step into the cool morning air with wonder in her eyes will make every shiver worth it.
This trip offers her the simple joys of a different season. She will feel the crispness of winter mornings, breathe in air that tingles on her skin, and maybe see her own breath as a tiny cloud. Even without snow, Florida has its own holiday charm. Street parades, Christmas lights, and cheerful gatherings fill December evenings. More importantly, she will be surrounded by a family whose love wraps around her more warmly than any winter coat.
Celebrating our journey
For Judy and me, the journey feels like a celebration of how far we have all come. Traveling is no longer an obstacle or a source of worry. It has become a symbol of progress and a reminder that the challenges we once faced do not define our future. Instead, we move forward together, one airport, one embrace, and one shared moment at a time.
As we prepare for takeoff, we do not simply think about the destination. We think about the joy in Rylae Ann’s voice, the laughter waiting for us at the doorstep, and the memories we will create in those 10 short days. It may not be an extended visit, but it will be filled with love, growth, and the magic of Christmas in our own Florida way.
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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