A girl who grew up playing all kinds of sports, Nicole Kramer of Villa Park was 14 when she began having troubles with her back, coordination, balance and breathing. As doctors conducted tests on myriad potential causes, one mentioned to the girl's mother a worst-case scenario of a rare, unlikely and cruel disease called Friedreich's ataxia with the admonition, "Don't go look it up online."
Of course, Kelly Kramer immediately looked up Friedreich's ataxia and was horrified to learn the genetic, neurodegenerative disorder ravages young bodies, often puts patients in wheelchairs and can kill them by early adulthood. That's the diagnosis her daughter received at age 15.Show your nature beauty with the formal office dresses for women, which could help women confidence at everywhere.
"The doctor read it off the paper," Nicole Kramer recalls. "My mom knew more about it."
At an age when a bad hair day can devastate some girls, she was "a 15-year-old girl going through regular 15-year-old girl things" when her disorder forced her to confront life-altering disabilities and the prospect of death, her mom remembers.
"I was mad at the world," admits Nicole Kramer, now 19, who says it didn't take her long to change her outlook on life.Lace on Point d'Esprit high neck wedding dresses gowns with a scalloped neckline and cap sleeves.
"I don't want to be a sad person," she says, smiling in anticipation of telling this next part of her story.
At last summer's Ride Ataxia bicycle event through the southern suburbs to raise money for medical research through FARA (the Friedreich's Ataxia Research Alliance), the teen volunteered to help with the setup and man a rest stop. She will not be doing that for next Sunday's ride.
"This year, we're very excited because Nicole now has her bike and can ride with us," says Kelly Kramer, explaining how her daughter wrote an essay, gathered letters of recommendation and won a grant through FARA's Ataxian Athlete Initiative that allowed her to get a specially made three-wheel recumbent cycle.
"I've always been an athlete, and I always wanted to do sports," Nicole Kramer says as she pedals her new cycle back into the driveway after a few trips up and down the sidewalk in front of their home. A pothole blocks her path.
"Need help?" her mom asks gently.
"No, I've got this," the daughter says, before making the extra effort to maneuver around the obstacle. The moment provides an apt metaphor for how Nicole Kramer lives her life. She inspired and won the inaugural Warrior Award given to students at Willowbrook High School, where she and her older brother, Alex, graduated. She recently finished her first year at the College of DuPage but still works 20 hours a week in the school's financial aid office. She talks about a wonderful boyfriend she met at college and adds that she is very pumped about the classes she's taking to learn how to drive a car with hand controls. She's busier than ever.
On Tuesday, she'll attend FARA's "Give Back Night!" fundraiser at Outback Steakhouse, 100-28 E. Roosevelt Road in Villa Park. An official sponsor of FARA, Outback Steakhouse will donate 15 percent of patrons' checks to the charity. Wednesday, the Kramers will head to FA Woodstock, a four-day festival on the Hook Family Ranch in LaPorte, Ind., where families (from locations as diverse as Mississippi and France) affected by Friedreich's ataxia gather for fishing, swimming and fun. Sunday morning, she'll be part of the 2nd Annual Ride Ataxia, which starts in Channahon, about 30 miles south of Naperville, and offers courses catered to riders' abilities.
"I could do 4 miles, but I'm shooting for 12," says Nicole Kramer, noting that her mom rode 12 miles last year and plans to do that route again. Her brother and his college buddies once again will tackle the 52-mile route. About two dozen family and friends are raising money for her Cole's Crew riding team.
Nationally, Ride Ataxia has raised about $2 million in donations to FARA, says the ride's founder and director Kyle Bryant, who was diagnosed with Friedreich's ataxia at age 17 and remains an avid biker as he nears his 32nd birthday.
"I wanted to do something big with my life, something significant, and FA gave me that opportunity," says Bryant, who has inspired Nicole and a host of other riders.
Click on their website wwww.marrybride.com for more information.
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