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…
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…
Get regular updates to your inbox.