A New Beginning
My son Austin is just twelve years old, but he's already faced more than many of us will in a lifetime. He was born with an incredibly rare genetic condition caused by a mutation on the SAMD9 chain, which means he lives each day with unrelenting pain and constant challenges. His body is in overdrive, producing so much inflammation that his muscles and joints are always sore, and a hive-like rash spreads across his skin, bringing with it recurring high fevers and other skin conditions. He's endured joint deformities that make simple tasks feel monumental, and because his muscles and joints tire so quickly, he's often limited in what he can do. Life for Austin hasn't been 'normal,' but he has faced it all with remarkable courage.
After years of searching, we have finally found a life-changing solution.
Austin has been accepted to receive a stem cell transplant at Arkansas Children's Hospital. Other children with similar conditions have had this transplant with incredible success, and we are filled with hope that Austin will, too. For the first time, he has the chance to live without constant pain, fever, and that persistent rash that's kept him from enjoying so much.
The reality, however, is that transplants are incredibly expensive. Even with insurance, the estimated cost is around $1.4 million, with a minimum out-of-pocket cost of $15,000 for us. And that doesn't include travel, housing, or food expenses. Due to Austin’s unique medical complications from his underlying condition, the transplant process may take up to six months. Austin's father and I will be splitting time with him, balancing our work and other family responsibilities back home in Texarkana as we try to navigate this journey.
Yet, in the end, if all goes as we hope, Austin will finally be free from the pain, the fevers, and the rash that has held him back. While this transplant won't eliminate his underlying condition entirely, it will allow his body to manage it better and give him a quality of life he's never had. Our transplant date is set for mid to late January 2025. Though we humbly ask for your prayers more than anything, any financial support to ease the medical and travel expenses would be deeply appreciated. Every donation will go toward making this possible for Austin, and any remaining funds will be reserved for future medical expenses as he continues his journey.
Austin is ready for this next chapter—more ready than I've ever seen him. He often tells me, "I'm so excited to just walk down the hall at school and not be in pain. I'm ready to walk around the zoo with my little sister without my wheelchair. And most of all, I can't wait to stop being stared at for my rash." He has such faith in this journey, reminding me often, "God brought me this far, and He's not done with me yet."
Read more about Austin Taylor in our May 2023 print issue.
In support of Austin’s upcoming transplant, his friends at Red Lick ISD have created a special shirt to help raise funds for him and his family. You don’t have to be a Mustang to show your support—just a cheerleader for Austin! Orders are open until Sunday, December 1, with shirts set to be distributed by December 20. Click here to order a shirt and support Austin and his family.
