OKLAHOMA CITY - Tanner Barbour is a miracle baby in more ways than one.
Shantell Barbour, a Putnam City teacher, and her husband John, a detective for the Norman Police Department, always knew that they wanted a family.
"We did fertility treatments for eight years, and the fertility doctor told us we have one in a 5 billion chance to get pregnant and be able to carry it" says Shantell.
Five years after that devastating assessment, they got word that they were expecting. That joyful moment was followed by another shock.
An alert doctor picked up on the fact that Shantell's brother had died of an extremely rare syndrome as a child. It's official name is mucopolysaccharidosis type II, but is often referred to by the simple name of Hunter syndrome.
Losing her brother was a dark time in Shantell's life.
"I felt very disconnected for the first few months, because it just wasn't all real yet," she remembers, thinking back to her pregnancy with Tanner.
Tanner arrived, and looked like the perfect baby. However, deep in his cells he lacks an enzyme that essentially takes out the garbage on a cellular level. Without intervention, the waste collects and does irreparable damage.
"It's irreversible damage to those organs. Children will die of heart and respiratory related problems, but before that begins, they're neurologically impaired and intellectually incapacitated," Dr. David Crawford, from Jimmy Everest Cancer Center, explains.
John Barbour, the family detective, did what he does best: investigate.
"I got on the internet and did a massive amount of research on Hunter syndrome. I found a 2016 study of a child who had a bone marrow transplant. It had a 98% success rate of stopping the disease from progression," he said.
The Barbours turned to Jimmy Everest Center for Cancer to save Tanner. He's one of the first children in the world with Hunter syndrome to get a stem cell transplant as a newborn.
"We want to intervene before the damage has occurred" explains Dr. Crawford.
Now, a $9,000-a-dose weekly enzyme therapy is helping Tanner's cells take out the cellular trash, which is delaying the onset of damage to his internal organs. His stem cell transplant is also protecting his brain from damage, although he'll need another transplant in the near future.
The Barbours are also hoping for a cure in the form of gene therapy. The problem is the expense.
Hunters is an orphan disease that affects less than 500 children in the United States, so between $2 million and $3 million needs to be raised to fund a drug company study. Pharmaceuticals are unlikely to do the research on their own since the market for a curative treatment would be so tiny. The Barbours are still very hopeful.
"Now I've come to the realization that I feel a cure will be found in his lifetime and it has led to a new outlook to say the least," Shantell says.
Tanner is a tiny rock star at Jimmy Everest. During his weekly visit, his parents often walk between floors where he's hugged and tickled by staff who all know his name.
"He's really lovable, everyone wants to hold him, we fight over who gets to hold him," Dr Crawford agrees.
Tanner is growing up with this extended family, a medical team that believes, along withhis parents, that Tanner can see a future never seen before for a child with Hunters.
"He amazes me everyday, just being able to watch all the milestones and see him progress as a normal child" says his parents.
If you'd like to help children like Tanner,consider donating to JECFriends.org
If you'd like to help find a cure for Hunters in the form of gene therapy, you can learn more at ProjectAlive.org
'Kids with Courage' is sponsored by the Jimmy Everest Center.