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…
Columns
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…
Recent Posts
- NORD adds 7 sites in 5 states as Rare Disease Centers of Excellence
- Simple strategies and new exercises help to correct mouth breathing
- New AI tool for doctors’ notes may save patients years to be diagnosed
- Computer-guided surgery delivers gene therapy to 2 children
- This Thanksgiving, I’m expressing gratitude and hope for the future