Daniel Orton gets the question all the time.
“What did your mother die from?”
Lupus, he tells inquiring minds.
“Well, what's that?” they'll ask.
Each time, Orton offers a brief explanation of the acute and chronic autoimmune disease that more than two million Americans and approximately 50,000 Oklahomans are living with.
“Not a lot of people know about it,” said Orton, the former Bishop McGuinness star who now plays for the Oklahoma City Thunder.
On Saturday, Orton will help raise awareness for the disease as the ambassador of the Oklahoma Walk & 5K Run to End Lupus Now. The event, which will be held at the Oklahoma City Zoo, is Oklahoma's largest lupus fundraising event. Its goal is to raise money for lupus research and education programs while increasing awareness of lupus and rallying public support for those who suffer from the debilitating disease.
“Like any disease, it affects people's lives,” Orton said. “Lupus is a very deadly disease. I just want (it) to gain awareness. That's pretty much the focus of this. Just trying to alert people and let people know about the disease because so many people don't even know about it.”
Orton had to learn the hard way.
Carolyn Orton was 52 when she lost her battle with lupus.
Daniel spent half his life watching his mother get checked in and out of hospitals. He was like so many others at first. Didn't know anything about lupus. Had never heard of it.
“Cancer was like the worse thing I ever heard about before this happened,” Orton said. “This was devastating in that for the first couple of years we really didn't know what to do or how to help her. But she helped us most by figuring out at an early stage in her diagnosis how to deal with it and how to keep it under control because that's the best you can do.”
Daniel first remembers learning that his mother was diagnosed with the disease in 1999. He was 9.
“Early on, when we didn't know what was going on, she had flu-like symptoms so we were just trying to treat it that way,” Orton said. “But it got to a point where she got worse.”
One day, Carolyn couldn't recognize Daniel's dad. Seconds later, she didn't know her oldest son, Terrence Crawford, Daniel's half brother who also starred at McGuinness before going on to play basketball at Oklahoma State.
“That's the part where they say the illness affects the mind,” Orton said.
Family members decided they needed to bring in Daniel. If Carolyn couldn't recognize her baby, they would have to get her to a hospital.
“So then I walked in and she said ‘Well, who are you?'” Orton remembers.
“That's one thing I heard at a young age, and I was dying when she said that to me. It just kind of threw me off. It threw me for a loop. I was upset that my mother might not ever know who I was again.”
Carolyn's mind soon recovered, but her immune system suddenly weakened.
She tired quickly. She couldn't eat much. She got sick easily.
Cold temperatures were cruelest to her condition.
“The toughest time was probably at the end,” Orton said, “when she was passing.”
Nobody saw it coming.
Orton was a senior at McGuinness, one of the best high school basketball players in the country. But his mother's rapidly declining health, coupled with a knee injury that cost him most of his final prep season, robbed Orton of what should have been one of the most special years of his life.
That year, Carolyn was in and out of ICU. Each time she was released, the family figured she was doing much better. But she suffered a stroke a week after one release and was sent back.
Orton, still unable to compete, found out from his coach after a game. When he went to the hospital the next morning, the news wasn't pleasant.
“They said your mother's going to have to learn how to read, how to talk, how to walk, how to write and do everything again,” Orton said.
Days earlier, doctors had said Carolyn would be fine.
A week later, on Feb. 10, 2009, she passed.
Carolyn was on life support in her final days.
“Basically a vegetable,” Orton said.
Carolyn's condition had deteriorated to the point that the family for which she used to be the backbone now had to make one grave decision: keep her on life support or set her free.
It was Orton who had to make the call.
He had based his decision solely on his mother's request, one that he relayed to members of his family. It was a desire by Carolyn that Daniel learned of while watching Lifetime movies with his mom. The two sat through a similar televised scene once.
“She said if it ever gets to that point, if it ever comes down to me living on life support, then just pull the plug because if God wants to take me then God's going to take me,” Orton said. “That's one thing I'll never forget that she said to me.”
Daniel was only 18 when he gave the order.
“It was by far the hardest choice I've ever had to make so far,” said Orton, now 22. “I think it's the hardest choice I'll ever have to make in my life. That's what it feels like.”
Terrence Crawford couldn't be any prouder of his younger brother. For how he handled the situation then and for the man he's growing into now.
“I think that shows a lot about his character to overcome that adversity,” Crawford said. “And really it shows a lot about my parents and the faith that they instilled in him to know that he can continue on and be successful.”
Crawford's father, Ricky, also died of lupus. He lost his battle back in ‘83. Ricky Crawford was only 26.
To see Daniel serve as the ambassador for Saturday's walk makes the event even more special for Crawford.
“It's good to see Daniel bringing awareness to it and bringing light to my mom because this is just a way for her legacy to continue on.”
Orton made attempts to partner with the National Lupus Foundation on events since he entered the NBA. But in his first two seasons with Orlando, there always was some sort of conflict.
“Since he came into the league he realized that he had a forum to raise awareness,” said Ara Vartanian, Orton's agent. “With the Thunder not advancing (in the playoffs), it gave him an opportunity to take this time and put his effort into this event. And it's a great situation for him because he's doing it in his hometown.”
Orton says he's honored to be part of the event.
“It means a lot to me,” he said. “It's just something that really is close to my heart. It's something that I had to deal with for nine years of my life, which was, at the time, half of my life. And so it was huge for me for them to ask me to do this. And for me to do it, it's something I know my mother would want.”
What is it: Lupus is an acute and chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually every organ system in the body. The disease can cause seizures, strokes, heart attacks, miscarriages, organ failures and, in some cases, death.
Who is at risk: Lupus can strike women, men and children of all ages. Ninety percent of individuals diagnosed with the disease are women, mostly of childbearing age. No one is safe from lupus. African Americans, Native Americans, Hispanic/Latino Americans and Asian-Americans are two to three times more likely to develop lupus, a disparity that remains unexplained.
How to diagnose it: Lupus can be difficult to diagnose because symptoms sometimes come and go or change over time and imitate other illnesses. While lupus symptoms are similar to those of many other illnesses, major gaps exist in understanding the causes and consequences of the disease.
How to treat it: Lupus can be disabling and fatal, but the disease can be managed in most cases through aggressive medical treatment and lifestyle changes.
What else: Lupus is not contagious. Researches discovered last year that it is hereditary and can be passed on from a mother to a daughter or son. … Over two million Americans are affected and approximately 50,000 Oklahomans and growing. … More women die from lupus-related symptoms than of breast cancer. … Lupus research and support is underfunded in comparison with diseases of comparable magnitude and severity.
ABOUT THE WALK AND RUN
* The Oklahoma Walk and 5K Run to End Lupus Now is one of the nation's largest walks within the Lupus Foundation of America organization.
* The event will be held at the Oklahoma City Zoo. Over 1,000 walkers and runners are expected this year.
* The event's mission is to raise money for lupus research and education programs while increasing awareness of lupus and rallying public support for those who suffer from the debilitating disease. The Oklahoma Lupus Chapter's fundraising goal is $100,000.
* Early registration begins at 7 a.m. for the Walk and Run. The Walk kicks off at 8:15 a.m. and the 5K Run will begin at 9:30 a.m. sharp at Remington Park.
* There will be entertainment and festivities provided for families to enjoy throughout the event.
* Oklahoma City Thunder and former Bishop McGuinness standout Daniel Orton will serve as the Walk ambassador. The name of his team is One Goal for Mom in memory of his mother, Carolyn, who died of complications from lupus in 2009. She was 52. Orton's goal is to raise $25,000 for the local chapter.
* For more information, visit oklupus.org, or call (405) 225-7510.