Brighter than the CANDLE
In 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 the extremely high level of inflammation in his body was wreaking havoc on his vital organs as well.” Because of the severity of his condition, the NIH convinced them to grant special permission for him to start the trial early.
So, at just 14 months old, Taylor became the youngest person to enter this trial, and he was only the tenth human to be given this medication. The trial was what they call a “compassionate trial.” The NIH had to show the FDA that he potentially had less than six months to live without the treatment, and there were no other known treatments that could prolong his life. Over the next year, despite a very strict protocol of medication and documentation, the doctors were very concerned. Taylor was not responding to the medications as they had hoped and was not expected to see his second birthday.
Over Christmas, however, a shift occurred, and Taylor soon defied the doctors’ expectations. Finally, at around two years old, he began eating solid foods like French fries and crackers. At two-and-a-half, he began talking. At almost three, he took his first steps. The doctors were astonished!
Though things were looking up, Taylor still was not responding the way the nine kids ahead of him had. He never went into remission or had periods of time without fever, rash, or pain. He never had a break. This led to more research and the discovery that there were a dozen variations of CANDLE, which is now considered an umbrella term. This helped to bring dozens of other kids from around the world to the NIH for research and treatment. They were all like Taylor, and the doctors needed to know more. While they were trying to find answers to treat his illness, his case became the catalyst for helping dozens of other families. As of September 2021, Austin was only one of five in the world known to have this specific genetic mutation.
Although a sense of relief accompanied having a diagnosis, Taylor’s journey was fraught with challenges. In July 2021, he contracted COVID-19 despite heavy precautions. He deteriorated rapidly and had to be flown by helicopter to Arkansas Children’s Hospital (ACH) alone, as Armstrong was not allowed to go with him because of strict COVID restrictions. “I placed my son in the care of the three flight medics that night and prayed they would make it safely to ACH,” she said. “I left the Emergency Room (ER) in preparation to drive to ACH, but when I walked out into the parking lot, there was a group of people from our church (First Baptist Church of Wake Village) who had heard what was happening and had gathered in the parking lot of the ER to pray as we watched the helicopter take flight. Once we watched Austin leave, I made a mad dash to catch up with them at ACH. I spent that two-hour drive praying for God to take care of my baby and prepare me for whatever He had planned for us in the coming days.”
Taylor’s condition worsened quickly once he reached ACH, and he was admitted to the Intensive Care Unit (ICU). Within 30 minutes of being placed on the vent, he crashed. Armstrong recalled, “That night was terrifying. There was nothing in his chart that could explain why he did not die that night…but God. His lungs were so full of COVID pneumonia that they had actually begun to collapse. There was no air moving into the lower part of either lung. So, they determined, based on all the evidence, that Austin was looking at around 30 days on a vent before his lungs would heal enough to breathe on their own.” However, just as he had defied all other odds, eight days later, he was extubated, and less than a week after that, they were headed home.
In September of that same year, less than three months after his diagnosis of COVID, there was absolutely no evidence that he had ever had it. There was no scarring on his lungs, no residual cough, and no complications from being on the vent. “It was purely God that brought us through that time,” said Armstrong. “The amount of people who rallied around us and prayed constantly for us was surreal. Complete strangers were crying out to God to heal Austin and protect his frail body. It was breathtaking, to say the least. “
Taylor has impacted many over the years. Morgan Morton, Children’s Director at First Baptist Wake Village, said, “Ministering to Austin has been different from ministering to any other child the Lord has trusted me with. Having a child in your ministry who is so very aware of mortality is significantly rare. Watching Austin flesh out his knowledge of this while also lining it up with the love that God has shown us through Jesus Christ has been an amazing blessing to me. Watching him process his emotions about what he is dealing with while listening to the Biblical truths the Lord has given me to teach, seeing him tear up—many adults would walk away from their faith because the pain is too much. But Austin has persevered. He continues to come. He continues to listen. He remains faithful to our God. It has been an incredible encouragement to me as his minister, but also God has used it to minister to me in my life. It’s amazing how our Lord does this.”
These days, Taylor spends his time playing video games with Red Lick School’s esports team, drawing, and playing percussion in the middle school band. He is an active member of his Boy Scout troop and is on the path to gaining his Eagle Scout in the coming years. He is a member of his church youth group. When he is down mentally, he takes quiet time to either play video games or watch YouTube. When he is down physically, he tries to sleep until the pain subsides. He is learning how to live an active and wonderful life in spite of his diagnosis.
From Taylor’s resilience in the face of adversity, Armstrong has learned many profound lessons. “He handles everything with so much more grace and strength than I ever could. Even in his darkest times, he can still put a smile on his face and find something to be grateful for. That doesn’t mean he doesn’t have sad moments, scared moments, and fears, but he never stays in those moments for long… I encourage him to remember that he is allowed to feel all of his feelings, but he is in complete control of how he reacts to those feelings. He can either let those feelings control his life, or he can trust that God has prepared him with enough strength to get through whatever it is he’s going through.”
