Rylae-Ann was born by an emergency cesarean section. As Mom was stitched up and came off the anesthesia, I remained with a crying, screaming baby. As a new dad, I didn’t have a clue. I instinctively snuggled up to her and began to hum softly into her ear. Three months…
The Journey of Beautiful Destinations — Richard E. Poulin III
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.
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There are moments in parenting that feel small when they happen, but later you realize they carry the weight of everything you have been working toward. For me, one of those moments happened at a bowling alley. My daughter, Rylae-Ann, was born with a rare disease called…
In September 2021, a post came across my Facebook news feed about a freelance writing position for AADC News. My wife, Judy, and I were still very much isolated due to our daughter’s condition, but I couldn’t help but click the link. After applying, I spoke with Matt Lafleur, the…
It may be an ill-formed sentence someone blurts or deliberate malice. Either way, any negativity expressed about our daughter, spoken or unspoken, goes straight to our hearts. My skin is thick, and I calculate my responses. Is defending my daughter over a statement that has no direct effect on our…
Today, our daughter, Rylae-Ann, sits at a piano and explores the sounds she can make, then jumps off the stool and heads to the xylophone to grab a mallet, which makes the magical sounds flow out. Music therapy was a strategy my wife used with her special…
After work a week ago, on a Monday, it was straight home. We grabbed our packed suitcases and headed for the airport. We arrived with an hour to spare, but then we had time to let the anticipation sink in about speaking in front of several hundred doctors. My wife,…
At 5:30 a.m., I quietly sneak out of bed, wash, dress, and straighten my tie. As I finish getting myself ready, my wife and daughter wake up to start their morning routine. With kisses all around, I make my way out the front door and escape to my world away…
Once Singapore’s warm, tropical sun had set, a cool breeze became noticeable. With only the palm trees swaying above my head, I could think clearly. I used to reserve this time for high-intensity sports. Now I use it to reflect on the day and plan for tomorrow. My evening walks…
When I don’t know how to do something, I’m the type of person to go figure it out. YouTube has taught me skills ranging from fixing a leaky faucet to trail running. My wife and I applied the same method when it came to speech therapy training. Speech seemed like…
Our daughter’s first three years of life were spent in a hospital. The first year involved diagnostic testing and fighting to thrive due to severe symptoms of aromatic l-amino acid decarboxylase (AADC) deficiency. The second year was gene therapy, and the third was…
As we prepared for the arrival of our daughter, Rylae-Ann, we expected some cute baby drooling. We were even excited about donning the burpee cloth as a sign of parenthood. However, her drool came flowing beyond what we ever imagined. Before receiving a diagnosis, we weren’t too concerned about…
As my friends and I sat in the shade under two large cabanas, members of the hotel staff brought us cool drinks and delicious Texas barbecue. Although it was hot, a cool breeze continuously flowed, and we took periodic dips in the pool. This experience was rare because I was…
Twelve plane trips, five states, and several adventures later, I feel blessed our family had a marvelous month-long summer vacation. However, as the vacation comes to a close, I am reminded that although our daughter, Rylae-Ann, received gene therapy to treat her aromatic l-amino…
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