Family united as kids work to find cure for sister's disease

  • Smiling before a high school dance, Joanna Lagedrost enjoys lots of support in her battle against an incurable, progressive disease.

    Smiling before a high school dance, Joanna Lagedrost enjoys lots of support in her battle against an incurable, progressive disease. Photo courtesy of John Lagedrost

Published: 9/9/2009 12:15 PM

As the youngest of four kids in this close-knit Hinsdale family, 16-year-old Joanna Lagedrost knew her sister, Sarah, coveted a prestigious clinical research gig in Philadelphia for a year before starting medical school.

"I got her the job," Joanna says matter-of-factly, a slight smile accompanying her dry wit. "I asked her to pay me the small sum of $50 and she still hasn't ponied up the cash."

Enrolled in the University of Michigan Medical School next year, Sarah says she'd rather repay her debt to her little sister by helping find a cure for Friedreich's ataxia, the devastating, progressive disease that threatens Joanna's life and has no cure or reliably effective treatment.

"I'm obviously very motivated because of my sister," says Sarah, 22, a study coordinator for Dr. David Lynch's Friedrich's ataxia research at the Children's Hospital of Philadelphia. "I tell her I'll help her eventually."

Friedrich's ataxia is an inherited disease that attacks the nervous system and weakens muscles. Symptoms usually appear during childhood and grow worse, often landing teenagers in wheelchairs. It can damage the heart and sometimes kill patients in early adulthood.

Joanna, who now needs a scooter to move around school, has to deal with all of that at an age when her fellow juniors at Benet Academy in Lisle might be obsessed with grades, college applications, class rings, compiling Facebook friends, the latest cell phone, a new zit or something as trivial as a bad hair day.

"I can't say I'm exempt from that," say Joanna, a petite, pretty blonde who does her share of texting and is an avid rock-climber in addition to taking honors classes. "I have to get up about 5:30 to be out the door at 7 because it just takes so long to get dressed and everything."

A girl who played soccer and volleyball, Joanna realized by fourth grade that something was wrong. She was slow and her balance was off.

Parents John and Sandy took her to a neurologist and eventually learned their youngest daughter had the rare, incurable disease that afflicts one in 50,000 people.

"I'm a nurse and I teach nursing at Loyola, and the room became uncomfortable," remembers Sandy. The parents and Joanna's siblings, Sarah, John and Julia, accepted the dire diagnosis and did the only thing they can.

"We're just going to live our lives," Sandy says. The family moved this summer into a house with an elevator, and constantly tries to get Joanna into the latest treatment studies.

Sarah is working with medical researchers whom she calls "very positive." Julia, who was Joanna's "best friend" during their years together at Benet, now "texts a lot" since the 18-year-old started her freshman year at Colgate University. John, who used to "carry her around the house," is now a junior at Cornell University who has recruited his fraternity brothers to join the effort as he runs in the Chicago Marathon next month to raise money for Friedreich's ataxia research.

Joanna's friends surprised her for her 16th birthday with a night on the town that included a limo, dinner and a fun photo shoot at a studio.

Even the family dog, Roxy, chips in.

"If I fall, she lets me hold her to get up," Joanna says. "If I scream or cry, she'll lick my tears."

There is hope. When the Friedreich's Ataxia Research Alliance not-for-profit agency ( began 11 years ago, "there were no clinical trials," says co-founder and president Ron Bartek. "We've got six clinical trials going on now, three more to occur in the next months and a whole lot more in the pipeline. We consider them not shots in the dark, but shots on goal, and some of them will find the back of the net."

Until then, Joanna, who says she is thinking of becoming a journalism major in college, refuses to be crushed by her disease.

"After a while, it's like, 'What's the point?'" says Joanna, whose quick smile lights up her face. "It's better to use my time doing stretches or whatever than shake my finger and say how unfair it is."