Villa Park teen rides to raise money for her rare disorder
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.
"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.
"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.
"A lot of what is frustrating about this disease is a lot of things seem out of our control," says Bryant, who began using a wheelchair three years ago when he no longer could walk but still enjoys the freedom that comes with his frequent 100-mile cycle rides. "The control part is very empowering for people."
Currently living in Pennsylvania and participating in a drug trial, Bryant sees hope for a cure. He notes the gene marker for the disorder wasn't discovered until 1996 and research has exploded since then. He figures the next decade could bring effective treatment and maybe a cure for him and others.
"That's the thing that pushes us harder and harder," says Bryant, who plans to attend Tuesday's fundraiser at Outback Steakhouse and FA Woodstock before the July 21 ride. "What drives everyone is the community we've built."
In addition to her family and treatment at the University of Chicago Ataxia Center, Kramer has a core of "really good friends" who support her.
"When I told my friends, they didn't take it well," she says, remembering the tears and disbelief caused by her announcement freshman year of high school. "That was really hard telling them."
A pretty teen who might be 6 feet tall if not for the scoliosis caused by her disorder, Kramer says she's hit many of the milestones for female teens.
"I don't really like dresses, but I did do some of that," she admits, telling stories about going to her prom, her goddaughter Ally's baptism four years ago and a wedding. No longer able to play softball, volleyball or other sports she once enjoyed, Kramer, who notes she still "swims like a fish," has gotten into biking and kayaking. She added a walker to her daily routine four months ago but wasn't using it when she fell and twisted her ankle on Mother's Day.
"I wasn't very keen on that idea. I'm still not keen of the idea," she says of the walker, an eye roll punctuating her displeasure.
"It beats falling," her mom offers.
"I can fall with style," the teen counters. "You have to learn how to smile on the way down."
The Kramers know how to do that.
"I can look at Nicole and say she's my hero," says Kelly Kramer, who works in customer service for Wood Dale's Frank Cooney Co., which makes school furniture. "I try to focus on all the progress they are making."
Nicole Kramer studies science in college.
"I want to work with animals, preferably dogs that are bigger than mine," the teen says sarcastically, as Juicy, the family's 12-year-old English cocker spaniel wraps her leash around Kramer's cycle.
"My dream is to open a shelter," Nicole Kramer says, "and train some of the animals to be service dogs."
In the meantime, she lives life as fully as she can and expresses confidence that research will develop treatments and eventually a cure.
"Something is going to change," Nicole Kramer predicts. "They're doing so many things."
• To take part, volunteer or donate to Ride Ataxia, visit the website rideataxia.org/chicago or call the Friedreich's Ataxia Research Alliance at (484) 879-6160.