CRYSTAL LAKE – Taylor Kassel will stand in front of thousands Sunday as an example of how to live with lupus.

The disease can take over if you don’t take it on. And that’s exactly what the 14-year-old Crystal Lake teen has done since her diagnosis in May 2011.

She’s fought both the disease and to raise awareness of it; she and her family are raising funds for lupus research. They’re dedicated to finding a cure.

Because of Taylor’s efforts, she has has been named the ambassador of this year’s Walk for Lupus in Chicago, hosted by the Lupus Foundation of America.

She’ll give a speech and lead walkers on a fundraising journey beginning at 10 a.m. Sunday in Lincoln Park.

Her message: “Just don’t stop your life just because of one disease. Don’t let that get in the way.”

That’s the point she plans to get across, although she admitted she’s “super-nervous” about the speech. She formed “Taylor’s Team” last year, raising the second-largest amount of donations for the Chicago walk. This year, she hopes to have more than 100 walkers and raise $10,000. Among her efforts, she’s sold “Taylor’s Team” bracelets to fellow students at school.

Most importantly, Taylor wants to tell her story to let others know they’re not alone and to give them hope.

It’s a story that began when the active teen, a softball and volleyball player, suddenly felt lethargic. Her legs would give out. She suffered from high fevers, hair loss and a rash.

An autoimmune disease, lupus damages the skin, joints and body’s organs. There is no known cure. Because the immune system begins to shut down, the body basically attacks itself. It’s a tricky disease, often difficult to diagnose.

It took nearly a year’s worth of emergency room visits, doctor appointments and the persistence of Taylor’s mom, Bonnie, before Taylor finally was diagnosed with the disease.

She nearly lost her kidneys because of a disorder caused by the lupus called lupus nephritis, which ravages healthy cells in the kidneys.

She now goes to Children’s Hospital in Milwaukee every six weeks or so and takes 26 pills a day to treat the symptoms. She focuses on nutrition and exercise to fight the disease, working out daily and watching what she eats and drinks. She mainly sticks with water, reads the labels of everything and tries to eat only organic foods that won’t irritate her skin or stomach.

“I honestly think it’s been getting easier as it goes on,” Taylor said. “I’m adapting to the medicine better. I’m having [fewer] side effects. ... It’s still a struggle now, but it’s just not as big of a struggle as it was in the beginning.”

What’s pulled her through, said her mother, Bonnie, has been her attitude, determination and faith. That, and the support of everyone around her, including her dad, Todd, and the couple’s other two children, 13-year-old Ben and 10-year-old Baylee.

Classmates, teammates, friends, Bonnie Kassel’s co-workers at Benedict’s La Strata in Crystal Lake, the community, friends and family have stepped up to help.

Taylor, with her mother rallying by her side, fought from the beginning.

“We’re just so proud of her. She is just defying the odds of this disease,” Bonnie Kassel said. “She’s just fought all these odds and doesn’t think about it and just stays positive and focuses on what she needs to do, which is her health and just being a normal kid.”

Because of the fatigue and pain that lupus can cause, including chronic headaches, the disease can lead to depression. Even the medications have side effects that can be debilitating. They can bloat faces and bodies, and make people weak.

“People lose themselves with this disease,” Bonnie Kassel said. “They say, ‘I’m done. I’m over.’

“I think that’s the total opposite of what Taylor has done. I think that’s why God gave us the disease. ... I have a big mouth and I’m very assertive, and she’s just a sweet little humble fighter and a very encouraging leader. I think the Lupus Foundation really wanted somebody who’s a fighter to say, ‘You can do this. Don’t give up.’”


How to help

For information on the Lupus Foundation of America, visit www.lupus.org. To register to join Taylor’s Team, visit www.lupusil.org, click on Programs & Events and the walk link. Click “Register,” then “Join a Team,” then “Taylor’s Team.” Donations also can be made to the team through the site.

Once again, the Kassel family will join a group of supporters to form “Taylor’s Team” at the Chicago Walk for Lupus, which helps raise awareness and funds to support the Lupus Foundation. Donations to “Taylor’s Team” are designated to find a cure for the disease. This year’s walk takes place at Sunday at Lincoln Park on the north side of Chicago. With about 85 members last year, the team raised roughly $7,500. Taylor’s goal this year is 100 walkers and $10,000 in donations. As of Friday, she had more than 80 walkers and $5,350 in donations. Donations can be accepted until Sept. 28 For more on Taylor’s Team, go to www.facebook.com/TAYLORSTEAM.


What is lupus?

Lupus is a chronic, autoimmune disease that can damage any part of the body, such as the skin, joints and organs. Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. Something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria and germs. Basically, the body attacks itself, destroying healthy tissue. Lupus can range from mild to life-threatening, and is not contagious. There is no known cure.

It strikes mostly women between the ages of 15 to 44. But men, children and teenagers develop lupus, too.

Symptoms include
• extreme fatigue
• headache
• painful or swollen joins
• fever
• anemia
• swelling in feet, legs, hands and/or around eyes
• pain in chest on deep breathing
• butterfly-shaped rash across cheeks and nose
• sun- or light-sensitivity
• hair loss
• abnormal blood clotting
• fingers turning white and/or blue when cold
• mouth or nose ulcers

Source: Lupus Foundation of America