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Why AADC Deficiency Is Often Confused With Cerebral Palsy

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 for interventions, only to restart the process after receiving a new diagnosis. We had three different diagnoses in six months…

Managing Excessive Sweating in Our AADC-deficient Daughter

Singapore, a tropical island located near the equator at just over 1 degree north latitude, is known for its lush gardens, warm waters, and year-round sunshine. As idyllic as this paradise is, it was not an ideal place to raise our daughter, Rylae-Ann, who has aromatic l-amino acid decarboxylase (AADC)…

Tips for Administering Medication to Children

During our family’s diagnostic journey to find answers, we were prescribed various medications. After discovering that our daughter, Rylae-Ann, had aromatic l-amino acid decarboxylase (AADC) deficiency, we hoped a new set of medications would alleviate her symptoms. But administering her medication has never been…

How Friendships Changed After Our Daughter’s Diagnosis

Things change, there’s no denying that. But when you’re handed the unexpected news that your baby, who was born healthy, has a debilitating disease, change can be life-altering. But change isn’t always bad. One of the first changes that came our way after our daughter Rylae-Ann’s diagnosis was new friendships.

How We Approach Teaching and Learning With Our Daughter

Once we started joining aromatic l-amino acid decarboxylase (AADC) deficiency communities, families began reaching out, offering support, and providing information. As our knowledge about the disorder grew, my wife and I began applying what we knew about education. Although we are teachers, we never sought to teach other families. Instead,…

How Anxiety Affects Our Daughter With AADC Deficiency

When a parent sees their child gripped with fear or anxiety, we immediately take action to reassure them that everything is all right and they are safe. However, with children who have aromatic l-amino acid decarboxylase (AADC) deficiency, this is not easily remedied. It is an issue that we constantly…