A transformative July culminates in homeschooling success
From COVID-19, to travels, to transitions, we're seeing our daughter develop
For our family, July felt like running a marathon while juggling. The month involved a constant mix of motion, focus, and unpredictability. Each day brought challenges, milestones, and surprises. As parents of a child with the rare disease aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I have learned to navigate life in bursts.
We’ve become accustomed to moments of joy quickly followed by unexpected setbacks, all while balancing the demands of care, the thrill of adventure, and the importance of learning. Last month was no exception.
July began with the unwelcome guest of COVID-19. After seven years of avoiding it, our daughter, Rylae-Ann, finally tested positive, just days before our planned trip to Italy and Switzerland. Thankfully, her symptoms were manageable, but as any parent of a medically complex child knows, illness is never simple. Every cough, every fever comes with heightened vigilance.
Adventures abroad
We delayed and adjusted plans, but in true Rylae-Ann spirit, she bounced back just in time to take on our European adventure.
Our family trip to northern Italy and Switzerland became a beautiful reminder of why we push through the tough days. Rylae-Ann, demonstrating her strength since her 2019 gene therapy, explored cobblestone streets, rode scenic trains through the Alps, and soaked in every moment. Travel with her still requires planning, pacing, and plenty of flexibility, but the joy in her eyes made it all worth it.
Summer school and setbacks
Returning home meant a quick pivot into summer school. Judy designed the summer program with Rylae-Ann in mind. But before the routine could settle in, another twist came our way. One morning, Rylae-Ann had to be rushed to the emergency room because of low blood sugar.
It was a frightening experience, but the emergency room team quickly stabilized her. Moments like that one remind us that even with progress, her condition requires us to be constantly aware.
New beginnings in learning
Rylae-Ann has already made great improvements in her writing skills during her first week of homeschool. (Courtesy of Richard E. Poulin III)
The end of the month brought one of our biggest transitions yet. It was the official start of Rylae-Ann’s homeschool journey. Judy’s too, as she’s leading the effort. Each morning, a small group of children gathers to learn together until lunchtime.
The change has been transformative. Rylae-Ann is thriving! Her confidence is growing alongside her academic skills. The one-on-one attention, the tailored pace, and the ability to adapt activities to her needs have made a world of difference.
Afternoons are all about movement. From swimming lessons to group activities, we’ve seen tremendous strides in Rylae-Ann’s physical abilities. These sessions not only strengthen her motor skills but also give her the joy of playing alongside other kids. That was a major concern for Judy when deciding to take her out of a traditional school setting.
As July came to a close, my own life entered a familiar transition. I returned to school as the middle school principal to welcome new teachers and prepare for the start of another academic year. While my days were filled with meetings and preparations, I couldn’t help but reflect on how each of us was stepping into something new.
The adventure continues. Life as a rare disease parent is always busy, constantly changing, and always full of surprises. But each transition brings growth, resilience, and gratitude for the moments that remind us why we keep moving forward.
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.
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