Living in limbo with a child who’s neither ‘severely ill’ nor ‘typical’

There is a space no one prepares you for. It is not the crisis of diagnosis, nor the triumph of breakthrough treatment. It is something quieter and, in many ways, more complicated. My wife and I felt it most recently while watching our daughter, Rylae-Ann, interact with her cousin, who was visiting Thailand for the Chinese New Year holiday.

The cousins, less than a year apart in age, stood in line for a children’s Chinese New Year event at a large mall in Bangkok. Rylae-Ann was dressed in red, smiling, and trying her best to follow the other kids’ lead. She knew the routine and wanted to belong to it. In many ways, she did. Yet her movements were slightly delayed, her timing just a bit off. She watched the others carefully before adjusting her steps through the dance and different stations. She did not look severely ill. But she didn’t look entirely typical, either.

That is the limbo.

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That path to limbo

Rylae-Ann poses for a photo outside of a mall in Bangkok after a children’s Chinese New Year event. (Photo by Richard E. Poulin III)

Rylae-Ann was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency at Christmas in 2018 when she was 8 months old. While others were celebrating, we were absorbing words like rare, neurotransmitters, and lifelong disability. At the time, she could not sit independently. Her muscle tone was profoundly weak, and feeding was a daily challenge. We were gently prepared for significant, permanent limitations.

Then hope came in the form of gene therapy. Five years ago, at just 18 months old, she received gene therapy as part of a clinical trial. Slowly, almost imperceptibly at first, her body began responding. Head control improved. Sitting came. Standing followed. Words emerged. The child we feared we might never fully meet began to show herself.

Now, at nearly 8 years old, her progress is nothing short of extraordinary. She attends school, speaks with humor and personality, and navigates a world we once feared might overwhelm her. And yet, the developmental gaps remain. Her motor coordination is still delayed. Emotional regulation can be fragile. Fatigue arrives more quickly than it does for her peers. Social interactions require more intention and effort. Independence is growing, but it is not yet automatic.

In the early years, the process of receiving support was easy to learn. There was a visible crisis. Doctors called. Therapists scheduled frequent sessions. Friends checked in. When a child is clearly very ill, the world knows how to respond. This stage is different. The emergency has passed, yet the journey continues.

We see both the strength and the strain. We see the extra effort behind each successful moment. We anticipate the fatigue before it shows. We calculate energy levels before committing to activities. We quietly prepare for emotional overload before others recognize the signs.

Feeling of limbo

There can be a subtle loneliness in this space. You feel immense gratitude for how far your child has come. You remember hospital visits and worst-case scenarios. You know what could have been. At the same time, you hesitate to voice ongoing concerns because progress has been so remarkable. It can feel as though you no longer belong to the community of families in acute medical crisis, but you do not fully belong in the world of typical parenting, either. You exist in the borderland between categories.

This in-between space has taught us something powerful about growth. Progress is not a straight line toward normalcy. It is layered and ongoing. It is a neurological change unfolding over the years. It is muscle memory built through repetition. It is confidence earned through small, brave attempts. Five years ago, what Rylae-Ann can do today would have felt impossible.

Living in this limbo requires holding two truths at once: Rylae-Ann is doing incredibly well, and she still needs support. We are optimistic, deeply so. Rylae-Ann continues to surprise us and grow in ways we once only hoped for. Optimism does not erase reality. The future will likely include continued therapies, careful advocacy, and intentional scaffolding. It will include moments when she blends seamlessly with her peers and moments when her differences feel more pronounced.

Rylae-Ann is not defined by a diagnosis, nor by comparison. She is not confined to a category. She is evolving. In this space between typical and severely ill, we are learning that belonging does not require sameness. Growth does not require perfection. Sometimes it simply requires staying on the stage, even when the rhythm feels a little different. For us, that is more than enough.

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.