No matter the odds, we’re never giving up on our daughter’s future

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 to give our daughter the best life possible.

We chose to never give up.

From the beginning, the odds seemed stacked against us. There was no treatment available at the time. But instead of letting that be the final word, Judy and I searched for every possible option. That pursuit led us to a clinical trial for gene therapy. It was experimental back then, but today it is approved in multiple countries and offers children like ours a chance at a brighter future.

Judy and I had to coordinate how Rylae-Ann would stay in Taiwan for the duration of the clinical trial while we were still working in Singapore, but we managed it. As a family, we accomplished it.

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Doctors warned us not to expect much. They said Rylae-Ann may never crawl or walk. Today, she not only walks but also runs, swims, and rides her scooter with joy. It didn’t come all at once. However, through consistency, commitment, and faith, she made small improvements in mobility. It was only a dream at first, but she holds our hands as we continue on the journey.

Later, schools doubted she would ever learn to read or write. Yet now she writes independently and is beginning to learn new languages. It required us to pull her out of school and open our own, but it was worth it. Through dedication, Judy never gave up. Teachers saw a girl who couldn’t hold a pencil; Judy saw an area for growth.

There was no road map, so we focused on creating milestones. Each milestone passed reminds us that limitations are not destiny and statistics are not the future.

The future

Rylae-Ann reads one of her finished writing activities with her mom. (Courtesy of Richard E. Poulin III)

The truth is, there is very little data about what children with AADC deficiency can achieve after gene therapy. Parents often ask us what their child will be able to accomplish, but the honest answer is that no one can predict what they will achieve.

What we can say with certainty is that progress is not determined by statistics. It comes from consistent effort, constant support, and believing in what is possible.

For us, the journey started even before gene therapy. Every therapy session, every activity, and every word of encouragement built a foundation. Small steps added up over time. At first, the progress was so gradual that Judy and I hardly noticed. Looking back, those small victories became life-changing transformations.

Every child is unique. Results will vary, and goals will look different for each family. But one truth remains constant. As parents, we can’t let negative talk or predetermined outcomes decide the level of support we give. Our responsibility is to provide every opportunity, every tool, and every ounce of love so our children have the best chance to succeed on their own terms.

For us, persistence conquers all, one small step at a time. We never quit, no matter what the odds may be. The mindset of never giving up has become more than a motto; it is a way of life. And every time Judy and I see Rylae-Ann chasing her dreams, we are reminded that hope, hard work, and unwavering belief can create possibilities that once seemed impossible.

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.