All About Multiple Sclerosis

More MS news articles for December 2002

Little Man Project has big heart

Community building house for family with 5-year-old who has MS

http://www.thehollandsentinel.net/stories/112802/loc_112802001.shtml

Thursday, November 28, 2002
By JOHN BURDICK
Staff writer

At first glance, you couldn't blame Dan and Laura Leffew for not being thankful this holiday.

Their family has been through the ringer.

Their 5-year-old son Luke has been hospitalized 13 times in the last 11 months because of his multiple sclerosis. Their living room has become Luke's bedroom, filled with his hospital bed and medical equipment. Laura spends every night sleeping on the floor next to him. Family plans can change in an instant.

"The cold or flu for him is life-threatening. We just live day to day," said Laura Leffew, who left her job at Woodland Realty to care for her son. "We're just grateful for that day."

The Leffews now have more reasons to be grateful.

The Zeeland community has rallied around the Leffews by making plans to build a handicap-accessible house complete with ramps, wide walkways, accommodations for medical equipment and a wheelchair-accessible bathroom and shower and safety features.

Bethel Christian Reformed Church has set up the Little Man Project, which is being supported by the Classis Zeeland Deacon's Conference. The Leffews attend Bethel CRC.

"The church has to show compassion for the situation that they're in," said Bill Ruthven, ministry coordinator of the Classis Zeeland Deacon's Conference. "We see it as an opportunity for churches all over to come together. This is just not for churches. We're hoping to get the entire community in the Holland-Zeeland area involved."

Leon Kragt, coordinator of the Little Man Project, said about $5,000 has been raised. Church officials want to get $50,000 by spring before they break ground for the 2,200-square-foot house, which will be built behind the Leffews' current home on 147th Avenue in Overisel Township. Church officials are also seeking donated building materials and volunteers to help build the home.

"It's been hard on them," Kragt said. "We want to make it more livable for Luke and the family. They need our help."

An account has also been set up at Macatawa Bank called the Luke Leffew MS fund. Donations are both for medical expenses and to build the house.

The Leffews said they've been overwhelmed by the community support.

"For the longest time as parents you feel alone," Laura Leffew said. "We're very thankful that someone cares. I don't want him to end up in an institution. We can't do that."

Luke showed no signs of illness until he was 2.

"One morning he could hardly walk, he kept falling," Laura Leffew said. "By that night, he couldn't stand. The next day he couldn't sit."

Luke had to learn how to sit, stand, crawl and walk again. Six weeks after first incident, one of his eyes turned inward toward his nose. His parents took him to Spectrum Health for an MRI. He was then immediately flown to the Mayo Clinic in Minnesota, where he was diagnosed with acute disseminated encephalomyelitis, a form of encephalitis similar to rabies.

"We were told he would gradually get better, that it would take awhile, but he didn't," Laura Leffew said. "It took us a long time to get a diagnosis of MS because it's not supposed to happen to kids that young."

Luke takes his treatment at Detroit Children's Hospital since his condition is so rare, his father said. He has also been treated 10 times at Mayo Clinic and has been hospitalized at Bronson Methodist Hospital in Kalamazoo.

"His doctors say, 'Luke, you're teaching us,'" said Dan Leffew, a conductor with CSX Railroad.

Added Laura, "It's not supposed to happen to kids. We're grateful we have some doctors who are now willing to take Luke's case on."

Luke is a student at the Ottawa Area Center. He has an older sister, Alexis, 7, and a stepbrother, Justin, 10. Luke has good and bad days. Some days he's energetic running around the house. Other times he is bedridden.

Luke has been invited to be the special celebrity to cut the ribbon kicking off the Lakeshore MS Walk at 10 a.m. May 3 at Beechwood Reformed Church.

"Our dream is for a cure so that one day he can climb trees and play football like other boys," his mother said.

The Leffews' pastor, the Rev. Jack Vander Plate, said he's been impressed with Luke's attitude.

"It's tough on a little guy to know how to deal with it," Vander Plate said. "He's amazing really."

Vander Plate said he admires the entire family.

"They have many, many obstacles," he said. "Their lives are 24/7 around this. That puts a lot of stress on everyone. As a church, we want to find as many was as we can to assist them."

Donations to the Little Man Project are tax-deductible. Checks must be written to Bethel CRC with "Little Man Project" written on the check. The church's address is 515 E. Main Ave., Zeeland MI 49464. For more information contact the church office at (616) 772-4342. Donations are also accepted at any Macatawa Bank branch for the Luke Leffew MS Fund.
 

© Copyright 2002 Morris Digital Works and The Holland Sentinel