For families in the AADC deficiency community, there is no perfect path

When our daughter, Rylae-Ann, first walked into a classroom at a private international school in Thailand, it felt like a moment we once thought might never come.

Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This rare genetic disorder affects the body’s ability to produce important neurotransmitters like dopamine and serotonin. Before gene therapy, our focus was survival, other therapies, and developmental milestones that many families may take for granted, such as sitting independently, feeding, sleep, and communication. Every small victory felt enormous.

Then came gene therapy. Slowly, and then all at once, our world began to change.

The physical progress Rylae-Ann made after treatment was incredible. My wife, Judy, and I shifted into a new phase of parenting. We still worked on therapies constantly, but academics had now become part of the conversation, too. As educators ourselves, we knew that learning is about much more than worksheets and grades. It involves confidence, communication, relationships, curiosity, and independence.

Thankfully, Judy worked at the same school Rylae-Ann attended, which made a huge difference in those early days. Rylae-Ann initially needed a shadow teacher to help navigate the classroom, routines, and social situations. There were challenging moments, but also moments when Judy hovered like a nervous undercover security agent pretending not to watch every interaction.

By first grade, something amazing happened: The shadow teacher slowly faded away. Rylae-Ann became more independent. She learned routines, built friendships, and adapted to the rhythm of school life. Watching her line up with classmates and carry her backpack around campus felt just as exciting as any major milestone we celebrated after gene therapy.

But as parents, and especially as educators, we also noticed something else: Rylae-Ann was capable of more.

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The transition to homeschool

Rylae-Ann confidently completes her grade 2 assignments independently. (Courtesy of Richard E. Poulin III)

Rylae-Ann was doing well in school, but we felt there was untapped potential. Some concepts needed more time. Some lessons moved too quickly. Other skills flourished when they were taught through movement, play, discussion, or hands-on experiences instead of traditional classroom pacing.

That realization led to a major family decision.

Judy resigned from her teaching position to homeschool Rylae-Ann while also supporting other students with similar learning challenges through our educational center. On paper, the plan appeared somewhat reckless. It was a choice that felt financially precarious, logistically draining, and perhaps even overly ambitious from an educational standpoint.

So, naturally, we did it. And honestly, this past year has been incredible.

Rylae-Ann thrived with individualized instruction. Judy built lessons around her interests, strengths, and developmental needs. Learning became flexible and meaningful. Some days involved math manipulatives spread across the kitchen table. Other days looked like science experiments, community outings, sensory activities, reading together on the couch, or debates over whether recess should be the entire day.

Oddly enough, the homeschooling journey also taught us something important as parents. Progress is not always linear, and it certainly is not one-size-fits-all.

Now, as this school year comes to a close, we find ourselves evaluating the next step once again.

Moving back to general education

Rylae-Ann enjoys reading and learning in her book nook. (Courtesy of Richard E. Poulin III)

This summer, Rylae-Ann will attend summer school at the school where I work. We see it as an important transition opportunity. For the first time in a while, she will learn in a setting without Mom sitting beside her every day. It will also give us valuable insight into how she handles learning and socializing alongside peers at her grade level.

Personally, I love the idea of continuing homeschooling. I see how much confidence Rylae-Ann has gained this year. I see the flexibility. I see the joy. But Judy also raises important points.

There are benefits to structured classroom routines, peer interactions, and learning within a larger school community. We have discussed the possibility of Rylae-Ann enrolling at my school next year. One potential compromise is having her repeat second grade. This would give Rylae-Ann extra time to strengthen her confidence, solidify foundational math skills, and allow her to enter the next stage feeling successful rather than overwhelmed.

That is something our journey with AADC deficiency has taught us repeatedly. There is no perfect pathway. There is no universal road map for families like ours.

The important thing is remaining open, reflective, and willing to adapt. Sometimes the best decisions come from changing directions entirely. For families in the AADC deficiency community, adjusting pathways is not a failure. It is part of the journey. The path matters far less than continuing to move forward together.

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.