Raydon Bowen, a 7-year-old boy from Kemmerer, is continuing his fight with Childhood Cerebral Adrenoleukodystrophy (ALD), including recent chemotherapy and a bone marrow transplant in Salt Lake City in an effort to stop the progression of this devastating disease.
Raydon father, Chris, recently shared the following story and update on Raydon, with the hopes that more people can understand the importance of newborn screening.
“When Raydon first began showing symptoms, we had no idea we were dealing with a rare and devastating disease. Like many parents, we thought we were seeing signs of ADHD, behavioral challenges, anxiety, and struggles in school. We sought help and answers, never imagining that the real cause was childhood cerebral adrenoleukodystrophy (ALD).
Eventually imaging and testing revealed the truth. Raydon was diagnosed with childhood cerebral ALD, a rare genetic disease that attacks the protective covering of the brain and nervous system. By the time we received answers, the disease had already begun causing irreversible damage.
Today, our seven-year-old son is fighting the hardest battle of his life.
Raydon has undergone intensive chemotherapy and a bone marrow transplant in Salt Lake City in an effort to stop the progression of the disease. The transplant offers hope of stopping further damage, but it cannot undo the damage ALD has already caused.
As a result of the disease and treatment process, Raydon has lost most of his vision. He struggles with confusion, anxiety, and the effects of the medications required to keep him alive. There are times when he cannot tell who is speaking to him unless he reaches up and feels my beard to know his dad is sitting beside him. There are moments when he is scared and crying while I hold his hand and try to reassure him that I’m right there.
This journey has affected our entire family. While Raydon remains hospitalized, we are also caring for our newborn son, Porter, and trying to support our teenage daughter, Emma. Our family has been split between the hospital, the Ronald McDonald House, and home. We have missed milestones, birthdays, family events, and many of the ordinary moments families often take for granted.
As a father, one of the hardest parts has been grieving the future we thought we were about to have together. Raydon and I bonded through the outdoors. We had plans for spring bear hunts, summer scouting trips, trail cameras, camping trips, and the entire upcoming hunting season. I had just bought him a new pair of hunting boots and matching camouflage so we could head into the mountains together. Today, I don’t know when he’ll be able to return to those places he loves, or whether those boots will even fit him when he does.
While our family continues to fight for Raydon, we also want to raise awareness about ALD itself.
ALD is a disease that can often be detected through newborn screening before symptoms ever appear. Early detection can mean the difference between treatment before brain damage occurs and discovering the disease only after irreversible damage has already begun. Wyoming now screens newborns for ALD, but that screening was not available when Raydon was born. Because of that, our family never had the opportunity to know this disease was silently progressing.
We hope that by sharing Raydon’s story, more families can learn about ALD, more people can understand the importance of newborn screening, and more children can be diagnosed early enough to receive life-saving treatment before symptoms appear.
Our family is incredibly grateful for the support we have received from our community, friends, family, and complete strangers. We still face a long and uncertain road ahead, but every prayer, message, donation, and shared story reminds us that we are not walking that road alone.
Most importantly, we want people to know who Raydon is beyond his diagnosis. He is a little boy who loves the outdoors, hunting, camping, exploring, and spending time with his family. He is brave beyond words, and every day he continues to show us what real courage looks like.”
