Christopher Culler looked forward to son Raydon Bowen wearing the matching King’s Camo outfit and boots he got the boy for Christmas as they set out on their annual spring bear hunt.
Instead, the 7-year-old Canyon Elementary School student in Kemmerer spent hunting season in the hospital following a diagnosis of an extremely rare genetic condition.
The disorder has left him without vision and fighting for life in Salt Lake City’s Primary Children’s Hospital.
“He is obsessed with bear hunting with me,” Culler said. “We have a good time usually. It’s more about crushing some Mountain Dew and snacking then it is hunting.”
Culler, 38, and wife Bailey Bowen, 30, now are now on a mission that has them on family leave from their jobs at PacifiCorp/Rocky Mountain Power and praying for a boy who seemed normal and active until a little more than a year ago.
At first, Raydon’s condition didn’t seem that serious. He started struggling in school, had trouble focusing, and was having emotional outbursts.
His parents suspected ADHD.
But at the start of the year, his behavior problems became worse and they went to the pediatrician looking for medication help. Nothing seemed to work.
As Easter arrived, Raydon was acting abnormally and the family wondered if it was his medication.
“On Easter Sunday we were at an Easter egg hunt, and all the kids were getting ready and they are doing a countdown,” Culler said. “Everybody runs out and starts picking up eggs, and Raydon just kind of walked out there passed 20 eggs and just kind of looked around and wasn’t excited.”
Culler said the first grader was instead tripping and stumbling.
He and his wife were unsure what was going on, but sent him to school the next day. They got a call from the school that he was having problems going up and down the stairs.
Raydon had to undergo nine days of chemotherapy before a stem cell transpant. (Courtesy Christopher Culler and Bailey Bowen) 
Raydon Bowen likes to go hunting with his dad. He missed the spring bear season this year. (Courtesy Christopher Culler and Bailey Bowen)
Trip To Utah
They called their pediatrician from work, who told them to take him to the local emergency room. Then she called them back and told them to take him Primary Children’s Hospital in Salt Lake City.
Culler with Bowen, then 38-weeks pregnant, headed for Utah.
At the hospital they were told Raydon would have to stay overnight for more tests. The next day an MRI scan showed areas of his brain that were white that were not supposed to be white.
Doctors told them Raydon had adrenoleukodystrophy (ALD), a rare genetic disorder that attacks the membrane that protects nerve cells in the brain and spinal chord.
The condition keeps the brain from communicating properly with other parts of the body, which was the reason for Raydon’s stumbling and other issues.
Raydon also was recently diagnosed with Addison’s disease that typically accompanies ALD and means he has a cortisol deficiency that will need to be medicated for the rest of his life.
Culler said it’s “frustrating” that they were chasing ADHD and has since found out that many other parents go down the same road because there was no newborn screening for the genetic disorder in their state.
“I’m like, ‘Why hasn’t anything changed? Why aren’t people screening for this?'” Culler said. “When Raydon was born, Wyoming didn’t do newborn screening for ALD, and a lot of states didn’t.
"Now there’s a few holdout states that still don’t, but most places do, and Wyoming does now.”
Once the couple learned the diagnosis, doctors also told them that there is no cure, but a bone-marrow transplant can freeze the destruction where it is at.
Raydon stayed in the hospital a week for more tests, and then the family came home as the hunt for a bone marrow donor began.
At left, the huge bank of medications Raydon Bowen was given. Right, his medical team at work. (Courtesy Christopher Culler and Bailey Bowen) 
Raydon at the beginning of his hospital journey. (Courtesy Christopher Culler and Bailey Bowen)
New Baby
The family stayed in Kemmerer about three weeks. Bowen decided she needed to bring the baby into the world to prepare for Raydon’s next hospital stay.
Their son Porter arrived through an induced birth on April 21.
Meanwhile, Raydon’s eyesight got worse as he rode his bike, but still he seemed to be enjoying time to play and try and be normal again.
Culler and Bowen have a blended marriage, and he used the time to prepare his 17-year-old daughter for the reality of he and Bowen having to go back to Salt Lake City.
Grandparents stepped up to help.
They kept in close contact with doctors and Primary Children’s Hospital as Raydon’s speech and vision were getting worse.
They then received word from their doctor that instead of a bone marrow transplant, Raydon would get an infusion of stem cells from umbilical cord blood.
The family went back to the hospital on May 4, and Raydon received nine days of chemotherapy to destroy his immune system. Then the stem cells were transplanted into his bone marrow.
Friday marked the 22nd day after the infusion.
His dad said Raydon spends his days laying in his hospital bed, unable to see or speak.
“It’s really hard to watch,” Culler said. "He’s to the point where it's kind of hard for him to do anything.
"There’s so much pain involved with doing that to a young body and agitation and anxiety that is astronomical.”
Culler said sometimes Raydon will try and feel for his mom’s ring or feel for his beard. Sometimes he reaches for a hand to kiss it.
“That’s kind of how we know that he’s still there,” he said.
Doctors and parents are waiting for “engraftment,” the process when donor stem cells start making new blood components.
In Raydon’s case it may take 30 days.
Hospital Living
For now, Culler watches their newborn baby at the hospital’s Ronald McDonald House every night while Bowen stays with Raydon.
They switch places during the day, and the past month is a blur.
Culler said he thinks about the future and possibility of needing a new home to handle a son who cannot see or may have other physical limitations.
He said his wife and Braydon’s grandparents are living in the moment and trying to make sure everything “is OK now.”
The family is grateful for a GoFundMe that has been started on their behalf and for fundraisers such as a hunting and fishing expo that is doing a 50-50 raffle for them, sales of T-shirts that say “Raydon Strong,” and a Utah-based company called Rise and Shed that is doing a fundraiser to help the family with their medical bills.
Culler said he has never been a person who has asked others for help.
“But we’re looking down this road, and we don’t know how long it’s going to be,” he said.
Culler’s mind goes to when he will return to work, the needs ahead, and more.
Raydon’s elementary school classmates have sent him cards and letters. Culler hopes that one day soon they will be able to read them to him.
Doctors have told the parents that the stem cells may be able to bring back some of the function that Raydon has lost. Time will tell.
Culler said his wife “just wants her boy back” and regrets the times she didn’t make the extra effort to read him that one more story that he was asking for or going to his room to play with him when Raydon asked.
Culler thinks back to the hunting trips, and how he was planning to teach him things this year.
For Raydon, the trips are mostly about the Mountain Dew that he could only get on special occasions.
“I told him we can have Mountain Dew when we’re in the mountains, when we’re hunting, or when we’re doing ‘dude’ stuff,” Culler said. “He says, ‘Come on, we’re mountain dudes, we gotta drink Mountain Dew.’ That was our thing.”
Dale Killingbeck can be reached at dale@cowboystatedaily.com.
