Posts by: Richard Poulin III

AADC News

Our attempts to feed our daughter, Rylae-Ann, who has aromatic l-amino acid decarboxylase (AADC) deficiency, were never a leisurely process. She fussed and spat out food while we endeavored to ... Read more

May 10, 2022May 10, 2022

Helping Our Daughter Push Through Multiple Therapy Sessions

AADC News

I often write about various types of therapy in relation to aromatic l-amino decarboxylase (AADC) deficiency, as I believe they are integral to the well-being of children with this disease. ... Read more

May 3, 2022May 3, 2022

First Exercises After Gene Therapy

AADC News

Gene therapy is complete! Now what? The first day after receiving the monumental gift of our daughter partaking in a clinical trial for gene therapy, we asked ourselves this exact ... Read more

April 26, 2022April 26, 2022

Adjusting Our Daughter’s Diet to Better Manage AADC Deficiency

AADC News

A sense of foreboding filled my mind when I first read that there are no approved treatments for aromatic l-amino acid decarboxylase (AADC) deficiency, a condition our 4-year-old daughter, Rylae-Ann, ... Read more

April 19, 2022April 19, 2022

After Gene Therapy, Hospitalizations Are Smoother for My Daughter

AADC News

Since our family’s first trip to the hospital on that dark and rainy night a few years ago, hospitalizations have always been challenging. Our daughter, Rylae-Ann, who turned 4 this ... Read more

April 12, 2022April 12, 2022

We Must Reduce the Wait for AADC Deficiency Diagnosis and Treatment

AADC News, COVID-19 News

Our daughter, Rylae-Ann, was born in April 2018. By December of that year, she had been diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, and we had received a subsequent ... Read more

April 5, 2022April 5, 2022

Be Mindful of the Signs of Depression

AADC News

Several years ago, sleepless nights plagued my wife, Judy, and me. This in turn allowed the fog of confusion to seep into every aspect of our life as we searched ... Read more

March 29, 2022March 29, 2022

The Importance of Choosing an Employer Wisely

AADC News

As the plane descended, my wife, Judy, and I peered out the window. We could see some city lights sprinkled across the island of Singapore, even though it was very ... Read more

March 22, 2022March 22, 2022

The True Number of AADC Deficiency Patients

AADC News

Earlier this year, CheckRare, a learning platform for healthcare professionals and rare disease patients, held a panel discussion about the rare disease aromatic l-amino decarboxylase (AADC) deficiency. The panel featured ... Read more

March 15, 2022March 15, 2022

Researching Symptoms of an Undiagnosed Disease

AADC News

When my daughter, Rylae-Ann, was about 3 months old, she wasn’t meeting her milestones. Then came the “spells,” which we thought were seizures. These unknown occurrences were followed by misdiagnoses ... Read more

March 8, 2022March 8, 2022

The Road to Enrolling in a Clinical Trial

AADC News

The chat message came late in the evening just a couple of weeks before Christmas 2018. My wife, Judy, and I lay in bed staring at our phones, trying to ... Read more

March 1, 2022March 1, 2022

How Change From Coffee Leads to Change in Lives

AADC News

Late in the evening, a car-hailing service picked us up, and with a hurried but firm voice, we told the driver to go quickly to the emergency room. We crossed ... Read more

February 22, 2022February 22, 2022

On Rare Disease Day, Remember Our Strength

AADC News

What are the chances that a girl from Taiwan would marry a man from the U.S., whom she happened to meet in Thailand, and unbeknownst to them, they were both ... Read more

February 15, 2022February 15, 2022

Finding the Perfect Nanny Who Will Love and Shadow Your Child

AADC News

The taxi came to a halt in front of our house on Sunday morning. The windows were tinted, but I knew who was inside. Out she came, a thin Asian ... Read more

February 8, 2022February 8, 2022

Why AADC Deficiency Is Often Confused With Cerebral Palsy

AADC News

Every time doctors attempted to provide a diagnosis for our daughter, Rylae-Ann, we immediately would join the relevant support communities, start discussing things with other families, and scour the internet ... Read more