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Dance Marathon: 14-year-old fights rare disease

BY MELISSA DAWKINS | FEBRUARY 01, 2012 7:20 AM

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Jordan Schmidt has big plans.

Not many 14-year-olds can say they have coached a high-school basketball game, appeared in a full-length film, spoke on a radio show, and found their way to the "Ellen DeGeneres Show."

But Jordan, a high-school freshman, can — despite a history of health-related obstacles.

"I've been thinking about [attending] the University of Iowa," he said. "I'm thinking about going into acting or maybe therapy for children."

Last month, Iowa City doctors diagnosed him as having epithelioid angiosarcoma, a rare cancer documented in only eight other patients throughout the world. Jordan is the first pediatric patient.

He and his family first noticed a problem last fall when a 5-year-old formerly benign tumor on his neck began to grow.

His recent diagnosis, however, has not dampened his spirit.

"He's just an amazing kid," mother Michelle McMullen said. "He has a positive attitude every single day, every single minute."

Jordan has a history of dealing with health obstacles.

At age 1, he was diagnosed with neurofibromatosis, which causes benign tumors to grow on the nervous system.

He underwent chemotherapy at age 3 to stop a rapidly growing tumor near his heart and had spinal-fusion surgery at age 4.

As a result of the tumor growth, Schmidt is significantly shorter than his peers, has leg length discrepancy, and has severe scoliosis.

Now a freshman at Alleman High in Rock Island, Ill., he excels in school.

"I love it, I really do," Jordan said. "Everyone's kind of like one big family."

Alleman school counselor Lynn VanDeHeede said what Jordan lacks in height, he more than makes up for in personality.

"He fills a room," she said.

His optimism led his family, friends, and classmates to rally behind him after they learned of his diagnosis.

VanDeHeede, who is also a student council adviser at the Catholic high school of 460 students, said the students wanted to do something to support Jordan.

What began as wristband sales snowballed into "Jordan Schmidt Small but Mighty" T-shirts stating "With Hope, Anything's Possible" on the back.

Jordan's classmates sold the merchandise, along with raffle basket tickets, at a recent Alleman basketball game. The theme was "superheroes" in his honor.

And he was named honorary coach, watching the game from the players' bench.

"He ran to half court, looked at the cheering crowd, and the crowd broke out saying, 'I Love Jordan,' " VanDeHeede said.

The crowd continued to cheer for Jordan through the game, which Alleman won, she said.

Afterwards, the opposing team members each gave him a hug.

Collectively, his classmates raised $6,300 to help with medical bills.

"What continues to shine through is that as a family, they have continued to show genuine appreciation and humility, and I think that is what people are drawn to and why they keep giving," VanDeHeede said.

"We take great strength from people's prayers," McMullen said, who has been amazed by the community's support.

Jordan also has online support.

Friends of Schmidt's family set up a website as a gift, after his Dec. 23 cancer diagnosis to provide updates, collect donations for medical costs, and gather funds for a chance to see his favorite celebrity — Ellen DeGeneres.

"Words can't express how amazing it is how there's a chance I could be sitting next to Ellen," Schmidt said. "She's really active with anti-bullying and the work she's doing for children. It just warms my heart."

The campaign was successful.

According to Jordan's website, DeGeneres will provide him two VIP tickets to see a live show of his choice.

But for now, he is focused on this weekend, during which he and McMullen will attend their first Big Event.

"I'm excited, all right," he said. "My mom and I have been talking about it for weeks. We're going to go there and dance a little."

McMullen said she and Hordan are taking on challenges day by day.

"We're a team," she said.

When doctors first discovered the tumor was cancerous, she said, Jordan had a significant amount of pain.

"So far [chemotherapy has] been working really well," McMullen said.

He and she travel to Iowa City every other week for his chemotherapy.

Over the weekend, he received another round of treatment.

"His treatment was great," McMullen said. "He's responding well. He's not had any nausea. It went really well."

While his hair has begun to fall out from the chemotherapy, he said he does not mind.

"I actually have a motto," Jordan said. "It's not me that's dealing with cancer, it's cancer that's dealing with me."


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