Creating lasting bonds with AADC deficiency families
Once again, my family took a summer trip to Taipei, Taiwan, to contribute data to a clinical trial. Our daughter, Rylae-Ann, is participating in a study of the long-term efficacy of a treatment…
Richard E. Poulin III is an American currently working as Head of Middle School for an international school in Bangkok, Thailand. He is also the president of the nonprofit organization Teach RARE. In 2018 his newborn daughter, Rylae-Ann, was diagnosed with the ultra-rare disease, aromatic l-amino acid decarboxylase deficiency. Richard shares his journey and aims to provide caregivers with strategies and tips to improve their family’s journey.
As parents of a child with aromatic l-amino acid decarboxylase (AADC) deficiency, travel has always required strategic planning and careful accommodations. From the earliest days of our daughter Rylae-Ann’s diagnosis at…
Read moreOnce again, my family took a summer trip to Taipei, Taiwan, to contribute data to a clinical trial. Our daughter, Rylae-Ann, is participating in a study of the long-term efficacy of a treatment…
A few weeks ago, our daughter, Rylae-Ann, mentioned she had a wiggly tooth. I gently pushed her teeth and found the wiggly one. The moment of losing her first tooth was near, and my…
Finding places to visit with our 6-year-old daughter, Rylae-Ann, has been challenging. But keeping her unique needs in mind when planning makes the process much easier. Rylae-Ann was born with aromatic…
Many parents may dread the summer break from school, but for my wife, Judy, and me, it’s a time to create memorable moments. With our daughter, Rylae-Ann, the greatest of these is when…
After years of struggling to get our daughter, Rylae-Ann, to sit for a haircut, we finally had a tear-free experience. Rylae-Ann was born with aromatic l-amino acid decarboxylase (AADC) deficiency, a…
My daughter, Rylae-Ann, followed me and my wife, Judy, into the mall for routine shopping. We were greeted with whimpers and yelps from various furry friends as soon as we entered.
With popcorn and drinks in hand, I walked with my 5-year-old daughter, Rylae-Ann, into the dimly lit cinema. Because of her limitations, I feared the worst but hoped for the best. My wife, Judy,…
As Christmas approached, Rylae-Ann practiced jingles and dances onstage while decked out in a colorful costume. When showtime came, however, crying and anxiety ensued. After much prodding, Rylae-Ann (center foreground…
My daughter, Rylae-Ann, was born with a rare and debilitating genetic disease known as aromatic l-amino acid decarboxylase (AADC) deficiency, which meant countless trips to the emergency room and a battery…
A supportive and loving community has sprung up around my daughter, Rylae-Ann. She says hello to everyone she meets on her way to school and makes it home without incident, all the while…
The sun hadn’t even risen yet, but my daughter, Rylae-Ann, was already melting down about changing out of her pajamas. By the time we got downstairs to start breakfast, her mood…
As I straightened my tie in the mirror, I could hear my daughter’s giggles getting progressively louder as she stumbled her way to my bedroom. When I heard her finally enter, I glanced over…
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