Austin Taylor, a resilient 12-year-old boy from Texarkana, Texas, is gearing up for a life-changing stem cell transplant at Arkansas Children’s Hospital. This procedure is the latest milestone in his long and brave battle against a rare genetic disease called CANDLE syndrome. While the transplant won’t cure his condition, it holds the promise of significantly improving his quality of life. Austin’s story is one of courage, hope, and the profound impact one family’s journey can have on others.
Austin’s medical journey began when he was just 9 months old. At that time, doctors at the National Institute of Health (NIH) in Maryland diagnosed him with CANDLE syndrome, a condition that typically manifests in the first year of life. CANDLE stands for Chronic Atypical Neutrophilic Dermatosis with Lipodystrophy and Elevated Temperature. It is a rare auto-inflammatory disease, distinct from autoimmune diseases, where the body’s inflammation response goes into overdrive. According to Austin’s mother, Carly Armstrong, his body produces excessive inflammation that it cannot process. This results in painful rashes, joint and muscle swelling, and persistent fevers that can reach dangerously high temperatures—often between 103 and 105 degrees Fahrenheit—if left untreated. Despite the grim prognosis, Austin has defied expectations, exceeding doctors’ predictions that he wouldn’t survive past his second birthday.
Life with CANDLE syndrome is anything but easy, but Austin has learned to adapt and find joy in the small things. The Red Lick student loves drawing in his sketchbook, spending time with family and friends, and playing video games. He’s even excelled in e-sports, earning a top spot in his school’s league for the past few years. These hobbies and connections bring him happiness and normalcy in a life often interrupted by medical treatments and challenges. Now, with the upcoming stem cell transplant, there is hope that Austin’s life could change dramatically. His mother explained that the goal of the transplant is to reduce his inflammation, eliminate the painful rashes and fevers, and alleviate the arthritic pain that has become a constant companion. The procedure could allow Austin to experience a life free from the debilitating symptoms he has endured for so long.
Austin’s journey has not only shaped his own life but has also made a significant impact on the medical community. He is one of only five children in the world diagnosed with his specific mutation of CANDLE syndrome. As a result, his case has been a valuable learning opportunity for doctors and researchers. Carly Armstrong shared that every doctor they’ve encountered has learned from Austin’s condition, and his experiences will help pave the way for better understanding and treatment of this rare disease for future patients. Austin’s resilience and the family’s openness to sharing their story have already begun to make a difference, inspiring hope for others facing similar challenges.
The community has rallied around Austin and his family for the past 12 years, offering both emotional and financial support. This outpouring of love and solidarity has been a source of strength for the family as they navigate the complexities of Austin’s care. Carly Armstrong has found additional strength in her faith, which has been a cornerstone for her throughout this journey. She shared a heartfelt reflection, citing a verse that has given her hope: “This disease will not end in death. It will glorify God.” Her faith has helped her trust in a greater purpose, even when the future feels uncertain. Austin’s scheduled stem cell transplant this spring is the next step in his journey, and the family is holding onto hope for the transformative impact it could have.
To help cover the medical expenses associated with Austin’s transplant, a GoFundMe page has been established. Anyone who wishes to contribute can visit the “Support Austin’s Life-Changing Transplant” page. The family is deeply grateful for any support they receive, whether through donations, prayers, or kind words. Austin’s story is a testament to the power of resilience, faith, and community. As he prepares for this critical step in his journey, Austin continues to inspire those around him, proving that even in the face of adversity, there is always hope for a brighter future.
