Racing to beat a deadly disease

A marathon brings together a teen and a runner who have felt the effects of leukemia

Education Beat

December 11, 2005|By KAREN NITKIN | KAREN NITKIN,SPECIAL TO THE SUN

For years, in their own ways, Justin Knight and Kellie Johnson have suffered because of leukemia. And for years, both have worked to raise money for research and patient services.

Now, for the first time, Justin, an eighth-grader at the Norbel School in Elkridge, and Johnson, a speech language pathologist there, are joining forces to support the Team in Training -- an arm of the Leukemia and Lymphoma Society that supports fundraising and training for marathons.

Johnson, whose father died of the disease in 2003, will run the Walt Disney World Marathon in Orlando, Fla., on Jan. 8 as part of Team in Training.

Justin, who was diagnosed with leukemia in 1998, when he was 6, is serving as a "patient hero" for the Maryland Team in Training, meaning he is sort of a mascot, said his mother, Deborah Knight.

"He sends them little letters, he e-mails them, he calls them," she said. "He just motivates them with his story and basically what he's been through,"

Or, as Justin, now 13, put it: "I cheer them on."

In addition to the race, the two are raising money at Norbel, a private K-12 school that specializes in students with learning and language disabilities, through activities such as an ice cream social and "pennies for patients," with collection canisters in the classrooms. The classes are in competition to see who can raise the most money.

"It's really fun," Justin said.

In October, the school held an assembly discussing the fundraising activities and encouraging students to get involved, Johnson said. The students have raised more than $1,000 so far.

`Amazing'

"We still have a couple of weeks to go, so we still don't have a final count," she said. "But for a school of 100 students to bring in $1,000, that's really amazing to me."

When Justin was 6, he woke up one day and found that he couldn't walk. His mother took him to their doctor, who ran some tests, called back and delivered the devastating news by phone: Justin had leukemia and needed to go to the Johns Hopkins Children's Center immediately.

"The whole whirlwind of treatment began that day," Deborah Knight said.

Justin began chemotherapy right away and remained at Johns Hopkins for three weeks. After that, he continued the chemotherapy for three years, staying in the hospital for a couple of days, then returning home, his mother said.

He had to be home-schooled during his first-grade year because his immune system was so weak that he could not come in contact with other children.

At Norbel

When Justin was ready for second grade, his mother enrolled him at Norbel.

"It's his favorite place to be," she said. "It's just a very, very special place, Norbel," she added. "They were a godsend for our family, they really were."

Though Justin is in remission, the chemotherapy has left its mark, she said. He is hard of hearing, and he sometimes has difficulty getting out his words. "He has to do things in smaller chunks of time," his mother said. "He can't have a lot of things thrown at him at a time."

Shortly after Justin was diagnosed, his family became involved with the Leukemia and Lymphoma Society, attending support groups and working to raise money.

"I speak at some of the leukemia society events, getting the word out, telling Justin's story," Deborah Knight said. Justin's older sister, Adrienne, 15, who attends Friends School in Baltimore, also speaks sometimes.

"It's been a wonderful relationship between the leukemia society and our family," Deborah Knight said. "We've felt very embraced."

Justin has been a patient hero for the Team in Training since 1999, she said. He traveled to San Diego and Orlando to cheer on teams, said his mother. However, they probably won't attend the Orlando race next month, she said.

Meanwhile, Johnson, 35, who lives in Columbia, was also getting involved with Team in Training.

"I wanted to do something, and I ran the Disney Marathon in January 2004 and raised $7,000 at that time," she said. She also serves as a mentor for the Howard County team, teaching other members about fundraising and giving them running advice.

The training group meets at Centennial Park at 7:30 a.m. Saturdays and runs as many as 20 miles together. When she started training, Johnson said, she could not run a mile. Her time in 2004 was a respectable 4:47, she said.

Skipped this year

She skipped the race this year because she was pregnant, and she is hoping to finish the 2006 race in less than four hours. Three hours and 50 minutes would be even better, she said, because then she could qualify for the Boston Marathon.

She met Justin soon after she started working at Norbel in January 2004, she said. "I was getting ready to run this marathon and came on board at Norbel," she said. "It kind of brought it all full circle."

Deborah Knight said Justin and Johnson are teaching the students at Norbel the real benefits of giving to charities.

"A lot of times, you see people raising money for different types of charities," she said. "I want people to know it really does affect real people. There are real people connected to these charities, and we are being personally helped."

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