We’re grateful our daughter quickly recovered from COVID-19

It was bound to happen. After six years of dodging it, our daughter, Rylae-Ann, finally caught COVID-19.

For my wife, Judy, and me, this triggered a rush of emotions, including fear, worry, and, ultimately, gratitude. Rylae-Ann isn’t like most kids. At just 8 months old, she was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder that severely limits the production of essential neurotransmitters. At that time, even a common cold could mean an emergency trip to the hospital.

Not long after her diagnosis, we were fortunate to enroll her in an experimental clinical trial for gene therapy in Taiwan. It required a major leap of faith and a six-month stay following surgery. However, that trial was unexpectedly cut short when news broke of a strange illness emerging from China. In January 2020, I rushed back to our then-home in Singapore with Rylae-Ann, just ahead of the first global lockdown.

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Blessings during lockdown

Ironically, that lockdown became a blessing in disguise. Both Judy and I were required to work from home, which meant we could be by Rylae-Ann’s side at every moment. Between Zoom meetings and online classes, we took turns participating in therapy sessions and engaging in play-based learning. Although we couldn’t leave the condo, Rylae-Ann’s world was filled with music, stories, games, and love. And despite the isolation, she blossomed physically, cognitively, and emotionally.

When COVID-19 vaccines became available, babies like Rylae-Ann weren’t eligible, nor did we push for them. At that point, we had no idea how a child with AADC deficiency — and one who’d undergone this revolutionary gene therapy — might react. Later on, studies and firsthand reports confirmed that the vaccine was safe. By then, however, we’d moved to Thailand, where even citizens had limited access to vaccines, much less expatriate children.

Years passed. Rylae-Ann stayed healthy and resilient. She did catch respiratory syncytial virus and the common cold, but she recovered easily. That was something we could hardly have imagined in the days before gene therapy, when even swallowing saliva was a risk. We counted our blessings every day.

Contracting COVID-19

Fast forward to this month, and COVID-19 is no longer the ominous shadow it once was. But for families like ours who lived with the threat of even a sniffle becoming life-threatening, the emotional weight still lingered.

Rylae-Ann sleeps while recovering from a recent bout of COVID-19. (Photo by Richard E. Poulin III)

It was the end of the academic year and the day after Father’s Day when Rylae-Ann’s grandma, who had just returned from a trip, tested positive for COVID-19. The next day, one by one, Judy, Grandpa, and Rylae-Ann also tested positive. Somehow, I remained the last one standing. But all eyes were on Rylae-Ann.

Would the illness unravel years of progress? Would her small body handle the virus the same way as a typical child? We held our breath.

A visit to the doctor soon after testing positive allowed Rylae-Ann to benefit from Paxlovid (nirmatrelvir/ ritonavir), an approved antiviral medication used to treat children with COVID-19.

Aside from fatigue and heavy congestion, thankfully, there wasn’t much else. She was tired, but she smiled through movie marathons, cuddled with us on the couch, and ate everything in sight. By day five, she was bouncing back with her usual spark and infectious giggles. She pleaded to go back outside and play.

Seven years ago, this scenario would’ve been unthinkable. COVID-19 used to terrify us. Now, it’s just another hurdle that Rylae-Ann has cleared with courage.

This experience was a full-circle moment. It reminded us how far we’ve come, from fearing the tiniest germ to watching our daughter recover from COVID-19 like any other child.

Thanks to gene therapy, Rylae-Ann isn’t just surviving — she’s thriving. And as I write this, bags are being packed. Our family is finally free of COVID-19 and ready for our long-awaited summer trip to Italy.

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.