Before our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, the telltale sign that something was amiss were the cyclical spells that began at 3 months old and occurred every three days. We initially thought they were seizures, but later learned they were oculogyric…
I had read a guide for dads before my daughter was born, so I knew what to expect before that first bowel movement. Called meconium, it comes in the first few days and is typically sticky, thick, and dark green — a mixture of old cells, protein, fats, and bile. Our…
Before my daughter, Rylae-Ann, showed symptoms of aromatic l-amino acid decarboxylase (AADC) deficiency, we had her in the ocean and the pool. I grew up on an island, where water activities were never far. Water has many healing properties and benefits that helped our daughter make progress in addition to…
Aspiration, a condition in which food or liquid enters the airway instead of the esophagus, requires our constant attention when caring for children with aromatic l-amino acid decarboxylase (AADC) deficiency. Due to the motor and autonomic dysfunctions associated with AADC deficiency, unfortunately,…
When I first became concerned that my daughter Rylae-Ann wasn’t reaching her developmental milestones, and that her limbs and eyes were moving strangely, I took to the internet to try to figure out what was happening. I came across an article about a young girl in Canada…
When I first learned about the severe symptoms associated with aromatic l-amino acid decarboxylase (AADC) deficiency, standing seemed like an impossibility for my now 3-year-old daughter, Rylae-Ann. However, physical therapists told me about a device that makes standing possible while serving as a form of therapy. At the time…
As a young boy, I used to lie in bed and play in my room imagining that I was a hero or that I had accomplished something great. Maybe everybody has had dreams like this. In my daydream, I was always in some sort of war or great battle, probably…
Get regular updates to your inbox.