Abilene man makes risky choice to beat rare blood disorder
Updated On: Sep 06 2013 12:08:49 PM CDT
"Chronic granulomatous disease is what I have. My blood doesn't kill bacteria. I can’t kill infection, I can kinda wall it off, but I couldn't get rid of it," said Hunter Hanner.
He was only the 100th person in the world to be diagnosed with the condition, at just two years old. The prognosis wasn't good.
"There weren't many kids older than me that had it because they didn't know what it was, and they typically got an infection and didn't make it… you didn't make it."
As a child Hunter had to be on constant guard against any and all germs- not easy for a three year old- but he did it. For years Hunter surprised the doctors, doing better than most with CGD. He eventually married his high school sweetheart, Jennifer Hathorn.
"At 15 you don't really grasp how life altering it really was. But by the time you fall in love, it just becomes a part of your life," said Jennifer.
The future was always uncertain, so they tried to make every moment count.
"We didn't ever talk about 50 year anniversaries because it's just, you didn’t talk about it," said Hunter.
The average life expectancy for someone with CGD is 30- a birthday Hunter just celebrated. Not long after that, they decided to seriously consider the only real cure: a bone marrow transplant, which was risky in itself.
"That was what was tough was going into knowing I have a 20 percent chance of not making it, but if I just keep doing what I doing no one has a clue I might live here 5 years or 40 more no one knows." said Hunter.
They prayed, moved forward, and found a donor match. They knew they had a long road ahead of them.
"My combination of blood disorder they had never done a transplant on at that hospital. The first ten days all I did was take lots and lots of chemo. You lose your hair immediately, you don't feel good. They're literally poisoning your whole system and killing everything in your system in ten days."
At first, doctors called him the "poster child" for bone marrow transplant. But in June, he took a dramatic downhill turn. It even looked like he might not make it at times.
"You go from, man I've got this thing whipped to worse shape than you were before the transplant," said Hunter.
"One of our toughest days, Hunter started a new chemo, they called it shake and bake. Basically uncontrollable chills in the morning and then burning up with fever later in the afternoon. Then the evening came around and our church had a carnival in our honor. Our friends sent us video message and It just felt like a big hug from six hours away," said Jennifer.
Hunter was a fighter and slowly started getting better. He and Jennifer said their church got them through their darkest hour.
“We had thousands of people praying for us and you could feel it.”
Jennifer started a blog about their journey. they had no idea the attention it would bring.
"We had people in Russia, people in the middle east, people in Africa, people in Europe. People from all over the world were reading her blog and praying for us. I was getting so many blood transfusions. They started running out of my blood type at the hospital. So my mom started via face book and the blog, they started getting the word out. The blood bank literally called us and said, 'I don't know who you are, I don't know what this is about but we're having so many people come in- you gotta start scheduling cause we've got too many people," said Hunter.
Finally, after four months of IV's, daily injections, hundreds of pills, and lots of pain, he was given the all clear to come home.
They have to take extreme measures to ward off germs, hunter wears this mask on his rare trip out in public, he also has to wear a paper mask even when playing outside with his kids. But he says he would do it again, for the future he'll now likely have.
"You just kept telling yourself, this is why I'm doing it so I can be around for my kids, and raise my kids, and see my grand-kids," said Hunter.
Jennifer and Hunter were away from their children for four months during the transplant. Right now the kids are mostly at home. They can't be around any other children or see their friends for another six weeks to keep from getting any germs.
If you'd like to follow Hunter's progress click HERE for a link to the Jennifer's blog.
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