TEXARKANA, Texas - A Texarkana, Texas boy battling a rare genetic disease is preparing to head to Arkansas Children's Hospital for a stem cell transplant.
While the procedure will not end Austin Taylor's medical journey, family members say it will increase his quality of life.
Taylor was 9 months old when physicians at the National Institute of Health (NIH) in Maryland diagnosed him with candle syndrome. The rare medical condition often starts during a child's first year of life.
"CANDLE syndrome is chronic atypical neutrophilic dermatosis with lipodystrophy and elevated temperature. Essentially, it's an auto inflammatory disease, which is kind of like a cousin to an autoimmune disease," said Carly Armstrong, Austin Taylor's mother.
Armstrong says her son's body has an overproduction of inflammation and doesn't know how to process it.
"So, the extra inflammation is what comes out as the rash that we see. It builds up in his muscles and joints and creates kind of an arthritic type of pain, and it creates fevers that untreated he would run 103 to 105 24/7," said Armstrong.
Armstrong says doctors didn't think her son would see a second birthday, but he's defied the odds.
The 12-year-old Red Lick student loves drawing in his sketchbook, spending time with family and friends, and playing video games.
"He's good at e-sports. He's been at the top of the league at Red Lick for the last couple of years," said Armstrong.
Austin will soon receive a stem cell transplant at Arkansas Children's Hospital. Armstrong says results from the treatment could be life-changing.
"The hope is that once he receives the stem cell transplant, he will have no rash, no fevers, no pain, and be able to live a life he's never lived to this point," said Armstrong.
His medical team began preparing his body for the transplant last summer. Armstrong says her son is one of five kids in the world to have his specific mutation of CANDLE Syndrome.
"Austin has now helped countless other kids and kids to come because every doctor we come across has never seen a kid like him. Well, now we're educating that doctor to be able to help the next kid," said Armstrong.
The community has rallied around the family for the last 12 years, providing them with moral and financial support, Armstrong said.
She says seeing how her son's life has impacted others has strengthened her own faith.
"I've always been able to rely on God to know that this is all his purpose. This is all for his plan. One of my favorite verses is this this disease will not end in death. It will glorify God. So even at the end of the day, if things don't turn out the way we want because we don't know a lifespan, we don't know what the future holds, that no matter how this turns out, it's going to glorify God," said Armstrong.
Austin's stem cell transplant is scheduled to begin this spring.
A GoFundMe page has been set up to help cover medical expenses.
If you would like to donate, go to the Support Austin's Life-Changing Transplant go-fund-me page.