Brother's illness inspires UFC 129's Ellenberger

When Jake Ellenberger climbs into the Octagon to fight Sean Pierson at UFC 129 on April 30 at the Rogers Centre in Toronto, his fraternal twin brother, Joe, will be in his usual position at cageside.

No matter how far he advances in his mixed martial arts career, Jake Ellenberger says he wouldn't think of fighting without his brother in his corner.

Two years ago, though, the promising 26-year-old welterweight was faced with the prospect of considering life without his brother, period. Joe Ellenberger had been diagnosed with an extremely rare blood disorder and his life, literally, hung in the balance.

Joe, a 10-0 lightweight prospect with dreams of competing in the Ultimate Fighting Championship, was headed into the gym for a workout in 2009 when he received a call from his doctor's office. He had made numerous visits to the doctor trying to find an explanation for his abdominal pain and abnormal fatigue, and wasn't too interested in making another.

Early on doctors had discovered that he was anemic and his red and white blood-cell count was very low. His personal physician and several hematologists were puzzled and kept having him return to have more blood drawn. Unable to determine what was causing his problems, doctors shipped a sample of his blood to the Mayo Clinic for analysis.

The results from the Mayo Clinic weren't what anyone expected. When the nurse called to tell him, she was insistent that he come to the office to discuss the findings of all the tests personally with his doctor. She wasn't eager to tell him anything over the telephone.

"She didn't want to say they had learned, and I said, 'Look, I'm the patient. Would you please tell me what is going on?' " Joe said.

Reluctantly, she told him the tests determined that he had paroxysmal nocturnal hemoglobinuria, or PNH. It meant nothing to him and, pleased it wasn't cancer, he figured he'd deal with it after his practice.

He texted his brothers, his parents and his fiancée and told them what the nurse had said. Then, he turned off his phone and went through practice. But when he turned the phone back on a couple of hours later, it was filled with texts and voicemail messages from concerned family members.

They'd gone to the Internet and discovered that PNH is a potentially life-threatening disease … and that the only approved drug to treat it cost over $400,000 a year.

"My fiancée [Vanessa] called crying and said, 'It says you are going to die in five years. What are we going to do?' " said Joe. "And I was like, 'What the hell?' I never thought it would be anything like this. I started reading up on it, and I guess that was a bad thing to do. There isn't a lot of research and there aren't a lot of statistics on this disease.

"Everything that has been done on it probably dates back to 1980, 1985. A lot of people don't realize they have it until they're close to death. There's not a lot of information on it, but everything you read was saying people are dying and they're getting bad blood clots in their brain, their lungs and in their heart. After I read all that crap, I was just like, 'No way.' "

As difficult as it was for Joe to hear, it was equally devastating for Jake, who had finally reached the UFC. Ever since they began to fight, the brothers talked of making the UFC and winning title belts at the same time.

When Jake listened as his brother explained the gravity of his condition, he got weak kneed. He felt nauseous. His mind raced. Emotions raced through his body.

"It was totally devastating, honestly," Jake said. "It's hard to describe how I felt. It was really hard to take. I wasn't sure what to think. We were both getting a lot better in MMA and starting to progress more and more and then, all of a sudden, you find out your brother has this rare blood disease. It really freaking sucked. I didn't know what to say, what to do. It was rough.

"Ever since we started fighting, we'd talked about becoming world champions and said we'd take over the world together. When this happened, my dreams were crushed. It felt like the ground collapsed under me."

The brothers grew up in Nebraska and were athletic all their lives. Jake was on the swimming and diving team in high school, and Joe began to wrestle when he was in the seventh grade. Joe played football, too, but he enjoyed wrestling, even though he said he wasn't particularly good at it.

"I wasn't big, I wasn't strong and I wasn't fast," Joe said. "I was nothing out of the ordinary. I was pretty bad at it, honestly."

Whatever he lacked, though, he made up for in determination. Joe Ellenberger was the kind of a kid who immersed himself in whatever he did and would work as long as he needed to get better.

By the time he was a senior, Joe won a Nebraska state title. He went to the University of Nebraska Kearney and became a two-time Division II All-American, finishing third in the country twice. He won 117 matches and left UNK in fifth place on the school's all-time win list.

He also was a three-time Academic All-American. He earned his undergraduate degree in industrial distribution and got a master's in sports administration.

He wasn't actually planning on becoming a fighter until his twin, younger by a minute, sort of tricked him into it.

Jake had signed to fight in an April 9, 2005, show and had asked his brother to come to support him. But two weeks before the show, the promoter needed more fighters and asked Jake if he knew of anyone else who would want to compete.

Jake said he did and, much to Joe's surprise, his MMA career was born.

"He signed me up for it and when he told me, I was like, 'What? I have no clue how to fight!' " Joe said.

He agreed, though, and figured he'd just use his wrestling ability to outlast the guy. The only problem was that he was matched against Kasey Kohl, who had won four Nebraska high school wrestling state titles while compiling a 139-1 record.

So much of easily outwrestling the guy, thought Joe. But Joe won by TKO and discovered he was hooked on MMA. The brothers would pursue fighting glory together.

"Things were going the way we wanted," Joe said. "Jake was doing great, and I was learning and getting better and making a lot of progress."

Then, all of a sudden, came the diagnosis of PNH. Life suddenly would be very different for both brothers.

Joe threw himself into understanding PNH the way he once had in his wrestling. What he learned is that PNH destroys some or all of the body's red blood cells, causing anemia and greatly increasing the risk of blood clots.

In 1995, a report in the New England Journal of Medicine indicated that 35 percent of PNH patients die within 10 years of diagnosis. The good news is that the mortality rates have improved. The bad news is that Soliris, the drug that has shown to work in many patients, is the most expensive prescription drug in the world.

Tamir Orbach, the executive director of the PNH Foundation, which is raising money for research into treatments and cures of PNH, estimated that Soliris costs $420,000 a year. Insurance pays about 80 percent of that, but many patients like Ellenberger receive assistance paying for the other 20 percent from the National Organization of Rare Disorders (NORD).

The Obama Health Care plan is critical to PNH patients because it does not allow a lifetime cap on benefits. At $420,000 a year, a young person like 26-year-old Joe would be capped in short order.

"ObamaCare has helped me immensely," Joe said. "Just that part of the bill changed the opinions of so many of my friends and people I know. I don't know if it has changed their political views, but they are pleased now that it was passed because they understand how significant that is for me."

Not all patients respond to Soliris, Orbach said, but the outlook is optimistic for those like Joe who do. Joe began taking Soliris, which is administered intravenously every 14 days, and has improved to the point where he is training and considering a return to fighting.

"Soliris stops the destruction of red blood cells for the majority of PNH patients," Orbach said. "It doesn't work for everyone, but it works for the majority of patients. Because of that, it stops most of the symptoms [of PNH], because all of them are related to the destruction of red blood cells. If you stop that, then you stop most of the symptoms and you also reduce the risk of clotting significantly.

"There is now talk, which is not proven yet because it hasn't been on the market long enough, that if someone is on Soliris and responding to it that they can have a normal lifespan."

Joe Ellenberger believes he's nearly at that point. He began to spar hard in November and went to camp with B.J. Penn as Penn prepared for a match with Matt Hughes at UFC 123 in Detroit.

He said his red and white blood counts and his hemoglobin numbers are nearly back to normal. As a result, he's eager to resume his dream of making it to the UFC and then capturing a world title along with his brother.

"My numbers are on the low end of a normal person, but still, for me, having my numbers in the normal range is a pretty big deal," Joe said. "I am very happy about that, and I've been telling my doctors that I need to fight again. At the beginning, it was almost kind of a joke.

"My wife, my mom, my brothers, their concern is for me to live a whole, healthy life. I guess that's my concern, too, but I also feel like, what is there to live about life if I can't live?"

He's not ready to return to action yet, but he's progressing and it's not out of the question that he could return sometime this year. To Jake, the news that it's even possible that Joe could fight again took his breath away.

His voice cracked with emotion as he described how he'd feel if he and Joe ever fought on the same card in the UFC.

"When Joe got sick at first, I felt I was fighting for the both of us and it really motivated me to work harder than I ever had," said Jake. "I wasn't just fighting for me. It was for us, for family. It was something bigger than me.

"I almost can't even imagine what it's going to feel like to fight on the same [UFC] card with him. It would be a dream come true. Our goals and aspirations have always been to be at the top level and to compete at the top level. If he could get back, it would be one of the greatest nights of my life. It would be more than awesome. I don't even know what I can say. Incredible."

Joe said it is incredible to him that his brother will fight on the biggest UFC card in history. A sellout crowd in excess of 55,000 is expected in the Rogers Centre on April 30.

And while he's not fighting, Joe said he'll be as full of adrenaline working in the corner for his brother as he would be if he were to get the green light to fight again.

"This is all part of the dream," he said. "We talked about fighting on the big cards and all of that and now, here it is, coming true. This is the first step. The next is for us to be [on the same card] together. And I'm confident – very confident – that that will happen someday."