AADC News

June 22, 2022June 23, 2022

Airway Devices Help in Breathing in AADC Children Under Anesthesia

AADC News

A less invasive airway device — called a supraglottic airway device or SAD — was found to safely and effectively maintain breathing in pediatric patients with aromatic L-amino acid decarboxylase ... Read more

June 21, 2022June 21, 2022

Our Family Values the Power of Grandmas

AADC News, COVID-19 News

Father’s Day has just passed in the United States, and I appreciate all the wishes and wonderful comments I receive each year. However, this year, I’ve been thinking about the ... Read more

June 14, 2022June 14, 2022

Sensing How Our Children With AADC Deficiency Perceive the World

AADC News

Imagine that arms reach into your warm and dark shelter of solitude and thrust you into blinding lights and chaos. Cool air surrounds you and tickles your skin. As your ... Read more

June 7, 2022June 7, 2022

The Benefits of Indoor Playgrounds for AADC-deficient Children

AADC News, COVID-19 News

One hour of physical therapy cost us $150. Therapy rooms were filled with swings, mats, blocks, and an array of colorful objects. There’s no space in our house to set ... Read more

May 31, 2022May 31, 2022

What Upstaza’s Likely Approval in Europe Means to Our Community

AADC News

Chimes and notifications began to appear on my phone on the morning of May 20. Messages and questions in my inboxes soon followed. Everyone was excited that the previous day, ... Read more

May 25, 2022May 25, 2022

Upstaza, First Gene Therapy for AADC, Favored for Approval in EU

AADC News

The gene therapy Upstaza (eladocagene exuparvovec), formerly PTC-AADC, has been recommended for approval in the European Union for patients, ages 18 months and older, with severe aromatic l-amino acid decarboxylase ... Read more

May 24, 2022May 24, 2022

Our Journey Is Not Determined by Our Genetic Code

AADC News

Our genetics are not written in stone. Who we are and who we will become is not a predetermined story coded in the proteins of our DNA. This may seem ... Read more

May 17, 2022May 17, 2022

Supporting Weight Gain in AADC-deficient Children

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 11, 2022May 11, 2022

Anesthesia Safely Used 3 Times in Boy, Now 6, With AADC: Case Study

AADC News

Three rounds of anesthesia — two in infancy and the latest at age 6 — were conducted safely and without incident in a boy with aromatic l-amino acid decarboxylase (AADC) ... 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 4, 2022May 4, 2022

PTC-AADC Gene Therapy’s European Approval Process Moves Forward

AADC News

A European Medicines Agency committee is expected to provide an assessment of PTC-AADC (eladocagene exuparvovec) gene therapy for treating aromatic l-amino acid decarboxylase (AADC) deficiency this month, which will inform ... 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