SPRINGFIELD, Mo. – Two-year-old Hunter Bruton has spent much of his life in a bubble, of sorts.
Born without a thymus, Hunter has no immune system and must stay in his sanitary bedroom most of the time. When he leaves his family’s home in Marshfield, about 30 miles northeast of Springfield, Hunter is in his wheelchair/stroller with a blanket over the top.
“Cleaning is all I do,” his mom, Victoria Parker, said. “I disinfect every day.”
Hunter’s older siblings come home from school and immediately change their clothes, wash their hands and face. They must leave their backpacks in the living room away from Hunter’s bedroom.
“(His nurses) sanitize all of his toys, his bed. Anything that would collect dust in his room has to be cleaned every day,” Parker said. “We use humidifiers and air purifiers in his room to keep the air rotated. We do as much as we can at home, but still keeping things as normal as possible for the other kids.”
Other than his grandparents, Hunter’s family typically visits with him via video chats.
“Everybody that comes to see him has to have a mask on. They use hand sanitizer and wash their hands,” Parker said. “I always ask before I let anyone in my house if they’ve had the flu shot, if they have been sick or have been around anyone that’s been sick within the last two weeks. Anything like that – I can’t let them in my house.”
Hunter was diagnosed with CHARGE syndrome shortly after he was born in early 2018. The missing thymus is one of several effects of CHARGE.
“They just kept finding more problems,” Parker said. “Each system of Hunter’s body has a problem.”
Still, Hunter is a happy boy.
“He’s overcome pretty much everything,” she said. “He doesn’t act sick. He doesn’t act like a child that’s spent over half of his life in the hospital.
“He acts like a really happy 2-year-old,” Parker said, emotional. “He just wants to enjoy the world, too.”
Hunter’s family is hopeful that will soon happen. He is on the list to have a life-altering thymus transplant.
The procedure was supposed to happen early this year. In December, the Federal Drug Administration declined to approve the procedure, citing concerns about the manufacturing process for the treatment.
According to Reuters, 10 clinical studies spanning over two decades and 85 patients were conducted at Duke University in North Carolina, where the treatment was developed.
Even though the FDA declined to approve the procedure, researchers at Duke are continuing with their study. One child was called in to begin preparing for surgery a few days ago, Parker said, so the family has hope that Hunter will soon have the transplant.
“They told us originally that his life expectancy without the thymus is 2 years old,” Parker said, adding that Hunter’s second birthday was a few weeks ago.
There are about 30 children and babies on the list at Duke to have the procedure, Parker said. Hunter is fourth on the list.
The procedure has about a 70% effective rate for children with no thymus, she said. Talking with other families and hearing success stories keep the Parkers motivated.
“There’s a little girl – she got her transplant at the beginning of last year,” Parker said. “She just got her test results back a couple weeks ago that she has a full immune system now. She is doing great.”
For now, Hunter takes five doses of 10 different preventative medications a day. In addition to the medicines, Hunter has an immunoglobulin infusion every month to help create an artificial immune system.
The family travels to St. Louis every month where he sees 17 different specialists.
But other than those doctor visits, Hunter must stay in the confines of his home and bedroom.
Because of the risks, the News-Leader was unable to visit the Parker home. Instead, Victoria Parker spoke with a reporter over the phone.
On Angels’ Wings, a local nonprofit that provides free professional photographs and support for children battling a terminal condition from maternity to 18 years, has followed Hunter’s journey and provided photos to the News-Leader.
An On Angels’ Wings photographer took Victoria Parker’s maternity photos and was there to help celebrate Hunter’s life when he was St. Louis Children’s Hospital.
The photographer wore a mask, gown and gloves and left her camera bag outside of the room for Hunter’s protection.
On Angels’ Wings was founded in 2013 by Springfield photographer Michelle Cramer. At the time.
“I’m the type of person to really connect with people,” Cramer said in an earlier interview. “It was hard for me to take a picture and walk away.”
Victoria Parker said On Angels’ Wings has been a true blessing to her family.
Along with the free professional photos, Cramer has helped Parker connect with other families as well as resources and organizations in St. Louis.
“They are awesome people,” Victoria Parker said of On Angels’ Wings.