May 2024


As a proud big brother, four-year- old Austin welcomed his sister Addyson into the family in 2017.

In 2024, Austin and his sister Addyson attended the joyful Easter service at First Baptist Church in Wake Village.

In April 2024, Addyson was by Austin’s side during his bone density infusion at Arkansas Children’s Hospital.

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



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