Huntley family fights disease with tennis shoes

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By Natalie Hayes, nhayes@libertysuburban.com
GateHouse News Service
Tue Aug 28, 2007, 10:50 AM CDT

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Huntley, IL -
Before Lou Gehrig’s disease robbed 37-year-old Amy Roper of her ability to take care of herself, Roper was an athletic woman who played soccer at the University of Wisconsin Greenbay and led an active adult life.

Roper, who grew up in Arlington Heights, met her husband, Michael, while she was in college, when he made the trip to Northern Wisconsin to watch his sisters play soccer for the team Amy Roper played for.

Amy and Michael Roper fell in love, got married and moved to St. Joe, Mo., where he got a job as a teacher and she worked as a probation officer.

Three years ago, the couple received devastating news that would mean their lives would never be the same again. Facts about ALS:


Amy Roper was struck with ALS, a terminal neuromuscular disease that affects nerve cells in the brain and spinal cord and eventually leads to death. A cure for the disease has not yet been discovered, and although the FDA has approved a drug to slow its progression, the life expectancy of an ALS patient averages about two to five years from the time of diagnosis.

Michael Roper’s mother, Tina, who lives in Huntley with her husband, Denney, said they were shocked at the diagnosis, which has left Amy Roper unable to take care of herself.

“She has to be fed because she can’t even lift her arms,” Tina Roper said. “She had been in fabulous physical shape, and was so young.”

Although most people who develop ALS are in their 40s or 50s, it is occasionally seen in people in their 20s and 30s, according to the ALS Association. The average age at the time of diagnosis is 55.

This isn’t the first time Lou Gehrig’s disease has affected the Roper family. Last year, Ken Reckamp, a friend of the Roper family, passed away as a result of the disease. For the past three years, in an effort to promote awareness and raise money to fight the disease, the Ropers have been walking in the annual ALS Walk4Life along Chicago’s lakefront as part of “Team Reckamp,” in support of their friend.

Although a trip from Missouri to Chicago is too far for Amy Roper to travel, the Ropers will be joined by Michael Roper, their daughters, and other family members, to walk in memory of Ken and in support of their daughter-in-law in a newly formed team, “Amy’s Army.”

With Tina and Denney Roper leading the team as captains, they have set a goal to raise $1,500 for ALS research. The Ropers’ neighbors in their Huntley community have contributed a generous amount to their cause, Tina Roper said.

Tina Roper sent out a letter in their neighborhood explaining about the disease and asking for donations. The response they received was overwhelming, she said.

“More than 80 percent of our neighbors responded with donations,” she said. “It was marvelous — I cannot begin to tell you how thankful I am.”

Last year ALS Walk4Life raised more than $840,000, and the ALS Foundation hopes to surpass that number this year, said Wendy Turner, executive director for ALS Walk4Life Chicago.

“We have high hopes for this year,” Turner said. “Whatever we raise is very much needed for ALS research and care.”

More than 5,000 people and 175 teams from all over the country are expected to attend the two-mile walk, which starts at Montrose Harbor and follows along the lakefront to South Avenue Beach. Registration opens at 8:30 a.m. on Sept. 8 and the walk starts at 10 a.m.

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• More than 5,000 people are diagnosed with ALS each year in the U.S.
• As many as 30,000 Americans have the disease at a given time
• 60 percent of people with ALS are men
• 93 percent of patients are Caucasian
• Half of all people affected with ALS live three or more years after diagnosis
• 20 percent of people affected with ALS live five years or more
• 10 percent of people affected with ALS live more than 10 years after diagnosis


Source: ALS Association