Sharing Our AADC Deficiency Diagnostic Journey at SSIEM 2022
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…
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.
Every April, as the blazing sun rises higher in the Thai sky, buckets are filled, water guns are loaded, and smiles stretch wide across faces. For most families, Songkran, the Thai New Year, is…
Read moreAfter 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…
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…
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.
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…
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…
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…
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…
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…
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…
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…
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…
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…
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