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…
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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I stood in front of a room full of middle school students on Feb. 27, the day before Rare Disease Day, and asked a simple question: “How many of you think you have ever met someone with a rare disease?” A few hands slowly went up. Most did not. Those…
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…
Another hospital visit and another test. Searching for answers for the condition of our daughter, Rylae-Ann, meant constant hospital admissions. Between testing and treating complications of this mystery disease, the hospital staff knew us by name. These trips involved drawing vials of blood, extracting cerebrospinal fluid (CSF), taping electrodes to…
As the sun crept higher into the beautiful morning sky, we decided to eat breakfast at a nearby park. The short walk would delay our normal breakfast time, but it seemed like a wonderful idea. But as we sat down to begin the picnic, our daughter’s skin turned noticeably pale,…
Airports are notorious for their challenging security and health requirements. Parents of children with special needs may find the thought of airline travel too daunting to even try it. However, we’ve done it three times on international trips with our young daughter, who has aromatic l-amino acid decarboxylase (AADC)…
Beneath my daughter’s skin, I know there are muscles, and deeper still is the desire to move. I know it’s there, but despite my willing her to move, she can only stare back. Sometimes I cannot meet her eyes, and my stomach twists, knowing I have no answers for her.
Father’s Day has just passed in the United States, and I appreciate all the wishes and wonderful comments I receive each year. However, this year, I’ve been thinking about the power of grandmas — the family members who have the greatest experience of being a parent. In my case, the…
Imagine that arms reach into your warm and dark shelter of solitude and thrust you into blinding lights and chaos. Cool air surrounds you and tickles your skin. As your eyes try to adjust, strange music combined with screaming disorients you further. Fear grips you when strange foreign objects are…
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