Paving new pathways for our daughter’s educational success

For our family, 2024 was a year of milestones and overcoming challenges. It was a good year, and progress was OK. But ever since our daughter, Rylae-Ann, was diagnosed with the rare disease aromatic l-amino acid decarboxylase (AADC) deficiency, “good” and “OK” have not been enough for us. We’ve always aimed higher, driven by the desire to give our daughter the best possible future.

When Rylae-Ann was 3, my wife, Judy, and I made the life-changing decision to move from Singapore to Thailand. The move wasn’t just a logistical change, but an emotional and financial reset. We wanted to be closer to family for their support and reduce the burden of medical and therapy expenses, which were overwhelming in Singapore.

Judy and I sold almost everything we owned, left our jobs, and relocated to Thailand at the height of the COVID-19 pandemic. Fortunately, we both secured teaching positions at international schools in Bangkok, albeit on different campuses. Job hunting at that time was complex and uncertain, but we made it happen. Judy’s school accepted Rylae-Ann — something we couldn’t find back in Singapore.

Recommended Reading

November 20, 2024 News by Marisa Wexler, MS

Youngest child to get Kebilidi gene therapy now walking, talking

The new journey in Thailand

Through kindergarten and first grade, Rylae-Ann made incredible progress. She began reading at grade level, improved her fine motor skills, and gained knowledge across various subjects. However, this success was primarily due to the hours Judy and I spent at home reinforcing her learning. Despite the extraordinary efforts of her teachers and school community, Rylae-Ann’s needs often went beyond what the traditional classroom could provide.

As first grade began, Judy and I found ourselves at a crossroads. We wrestled with the idea of homeschooling Rylae-Ann. Alternatively, we could continue pushing our daughter to adapt to a traditional school system and risk her falling behind, or we could do what we’ve always done: forge our own pathway.

Creating our Pathway

Family, friends, and monks attend the grand opening of Pathway Educational Center in Thailand. (Courtesy of Richard E. Poulin III)

Parenting a child with a rare disease like AADC deficiency comes without a manual. There were no guidebooks or blueprints to follow. Through trial and error, we’ve had to build our journey one step at a time. This time was no different.

Last April, Judy made a bold and courageous decision: She stepped away from her 15-year teaching career to create something that didn’t exist. Together, we purchased a building with the dream of establishing an inclusive educational center. From April to October, we worked tirelessly to renovate the space and fill it with carefully curated educational resources.

By November, we had formed a small but passionate team to launch our school. In December, guided by feng shui calculations, we celebrated the grand opening of Pathway Educational Center. Although the school is still in its infancy, it already serves nearly a dozen students. And in July, it will welcome its most important student — Rylae-Ann — as a full-time learner.

Our primary goal was to create a space where Rylae-Ann could continue to thrive, but we realized many families in Bangkok face similar challenges. Our center is now the only fully inclusive institution in the area offering personalized learning for students with diverse needs.

The decision to embark on this journey wasn’t easy. It required immense financial and emotional investment. The fear of failure has always loomed in the background, but we’ve never let it stop us. Our past successes and the progress Rylae-Ann has made have been constant reminders of why we persevere.

Making the dream come true

Last month, Judy stayed behind to ensure the center’s first month was a success while Rylae-Ann and I traveled back to the United States to spend the holidays with family after the passing of my stepdad. It was a bittersweet moment — a reminder of the sacrifices and balancing acts that come with pursuing this dream.

The journey hasn’t been easy, and it likely never will be. But sometimes, when no path exists, you must pave your own. And that’s precisely what we’ve done — for Rylae-Ann, our family, and others who deserve the same opportunities.

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.