May 2024


Austin was first admitted to Arkansas Children’s Hospital when he was three months old.

At 18 months, Austin was all smiles.

At the age of four, Austin participated in a pulmonary function test conducted by the National Institute of Health.

I n all the stories we hear daily about human resilience, few move us more profoundly than those about children battling chronic medical conditions. Austin Taylor, a now 11-year-old Red Lick student who is battling Chronic Atypical Neutrophilic Dermatosis with Lipodystrophy and Elevated Temperature (CANDLE) Syndrome, is an inspirational example of this truth. Taylor has shown remarkable courage and stands stronger every day in the face of this relentless opponent. From the early age of three days old, his mother, Carly Armstrong, recognized signs of distress. What seemed like a simple case of baby acne quickly progressed into large welts and blisters and colic-like symptoms. Despite her initial dismissal by physicians, Carly reflects, highlighting her mother’s intuition, “I knew in my mom’s heart and gut that something was wrong. His first pediatrician just kept telling me to wait. ‘It is baby acne. It will go away.’ and ‘Just wait. It is contact dermatitis, and it will go away.’ Waiting did not sit well with me. My baby was colicky and miserable, and no one could help me answer why.” Her persistence and determination led to a pivotal encounter with Dr. Christina Payne, who recognized the complexity of Taylor’s case. Referrals to one specialist after another ensued, culminating in a crucial meeting with Dr. Jason Dare. Dare’s unwavering dedication marked a turning point in Taylor’s diagnostic journey. Through Dare, Taylor was referred to the National Institute of Health (NIH) eventually leading to a diagnosis of CANDLE Syndrome, but he was presenting differently than other CANDLE kids. At

the time, Taylor was only the tenth person in the world to be diagnosed with CANDLE syndrome. It was a newer disease with few answers, but Taylor’s mom and team were determined to get him the help he needed. Taylor was not developing normally. He was nine months old but at the size and development of a six-month-old. He was refusing to eat solid foods, gagging any time his mom tried to introduce something new. This resulted in a diagnosis of failure to thrive and the placement of a gastrostomy (G)-tube to aid eating. Armstrong blended food for him to receive through the G-tube, hoping to supply him with the nutrition he needed. The NIH concluded, based on the evidence they had and the quick progression of his disease, there was not much hope for improvement. His family was told Taylor would probably never walk, talk, or eat normally. What Armstrong initially believed to be colic was actually severe pain from inflammation that was taking over Taylor’s body, causing chronic fevers and swelling. They learned that the inflammation was collecting in his muscles and joints, making every movement incredibly painful. There were new trials being done on CANDLE kids, but the Food and Drug Administration (FDA) had placed a minimum age requirement for the trial and Taylor had to be at least two in order to qualify. He was only nine months old at the time. “The fear of having to wait 15 months to begin treatment was terrifying,” said Armstrong. “The longer we waited, the more fevers he would have. High fevers run the risk of hearing loss, vision loss, brain damage, or organ damage, not to mention that



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