Navigating the anxiety of change while notching the improvements

As parents, Judy and I have learned that change can mean very different things to different children. For many, change brings excitement, curiosity, and growth. For our daughter, Rylae-Ann, change once meant fear, uncertainty, and overwhelming anxiety because of her rare neurotransmitter disease, aromatic l-amino acid decarboxylase (AADC) deficiency.

Before she received gene therapy in November 2019, even the slightest shift in her world could feel like a storm too big to handle. Looking back almost six years later, we can see how far she’s come, and we want to share this journey with other parents who may be walking a similar path.

Anxiety before gene therapy

Before gene therapy, Rylae-Ann’s world was fragile and unpredictable in ways that most people could never imagine. Something as simple as walking into a new room or seeing a new face could reduce her to tears.

It wasn’t that she didn’t want to explore; her spirit was strong and curious. But her body and nervous system simply couldn’t process change. A sudden sound, a stranger’s smile, or even the act of traveling to therapy became more about managing tears than making progress. We longed to help her experience life fully, but at the time, her anxiety built walls that felt impossible to climb.

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Even the environment around her had to be carefully managed. Rylae-Ann’s body struggled with temperature regulation, and she was often drenched in sweat. We worked tirelessly to keep our home cool and comfortable, knowing that even a slight rise in temperature could throw her into distress.

Something as natural as summer heat, which most families embrace with outdoor fun, became a daily battle for us. Our home became our safe haven, a carefully controlled space where we tried to create a sense of predictability and calm.

Sensory experiences of water, sand, and the simple joy of Play-Doh were nearly impossible for Rylae-Ann. A trip to the beach or a splash in a pool wasn’t the carefree activity it might be for other families. Instead, these sensations overwhelmed her to the point of tears.

We often found ourselves staying indoors, relying on a consistent routine to bring her comfort. We tried to fit therapy into this structure, both at home and at clinics, but the truth is, much of the time was spent simply trying to soothe her cries. Therapy became less about progress and more about surviving the moment.

Anxiety after gene therapy

Rylae-Ann works on balance through exercises at home. (Photo by Richard E. Poulin III)

Then, in November 2019, our world shifted. Gene therapy gave Rylae-Ann not just a second chance, but an entirely new way of experiencing life. The changes didn’t happen overnight, but slowly, the grip of anxiety began to loosen.

Hospital visits, which had once been a source of dread, became easier with the help of drama therapy, which offered her new ways to process and cope. We began to take her to parks and beaches, places that once felt impossible, and saw glimmers of joy replace the tears that had so often defined those experiences.

One of the most beautiful changes we’ve witnessed is her growing independence. Where she once needed us constantly by her side, Rylae-Ann can now separate from us more easily. Today, she wakes up in the morning, grabs her iPad, and even eats her breakfast independently. Her quietly taking care of herself while Judy and I savor a few extra minutes of precious rest is monumental when we think about where we started. It represents not just independence, but freedom from the anxiety that once consumed her.

That doesn’t mean the anxiety about change is gone completely. AADC deficiency still leaves its mark, even years after gene therapy. When we take a new route home, Rylae-Ann is quick to notice, peppering us with questions until she feels reassured. A sudden change in routine can sour her mood for the entire day.

Most recently, when we took her to a new physical therapy clinic to address her posture and balance, the combination of a new doctor, new environment, and new assessments became too much for her. We had to cancel the session, and as parents, we found ourselves reminded of the delicate balance we must always maintain when helping her grow.

Yet even in these moments, we see progress. What used to trigger complete meltdowns is now something we can work through together. With patience, creativity, and teamwork, Judy and I help Rylae-Ann face her anxieties. We adjust, we plan, and most importantly, we remind her that it’s OK to take things at her pace. Change may always bring challenges, but it no longer holds her captive.

To other parents walking a similar journey, progress may feel slow, and the weight of anxiety may feel heavy at times. Still, with time, love, and the proper support, change can transform from something terrifying into something manageable. Step by step, the walls of anxiety can be lowered, and your child can begin to explore the world with curiosity and courage.

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.