wfn.org | Woman's 600-mile walk raises money to fight rare disease

[NewsDesk <NewsDesk@UMCOM.ORG>]

Oct. 10, 2001 News media contact: Tim Tanton7(615)742-54707Nashville, Tenn.
10-71B{462}

A UMNS Feature
By Lisa Schubert*

Ann Keefer answers the door in stocking feet, the same ones that have taken
more than 1.2 million steps, worn eight different pairs of sneakers and trod
600 miles in the past 31 days. 

She sports a mustard-yellow T-shirt with a picture of her 4-year-old nephew,
Larry Barnett, as a constant reminder of his pain and her purpose. 

Keefer smiles from ear-to-ear, hinting at the joy that has sprung into her
heart. But that joy is not without sorrow. As she reflects on her incredible
journey, she knows that Larry may be near the end of his earthly one. 

Larry is one of about 200 boys in the United States with Lowe Syndrome, a
rare, usually terminal genetic disease that causes an enzyme deficiency
affecting the eyes, brain and kidneys. 

 From Aug. 18 to Sept. 17, Keefer, 39, a member of Wesley United Methodist
Association, which supports families and researches a cure.  
Westfield, Ind., to raise more than $29,000 for the Lowe Syndrome
Church in Bloomsburg, Pa., walked from her home to Larry's house in

Keefer becomes emotional as she describes how the experience changed her
life, gave her direction and opened her heart to God.

Her story begins four years ago, when Larry was born two months prematurely
with cataracts, kidney problems, poor muscle tone and severe mental
retardation. 

"I was devastated," Keefer said. "My sister and I are very close, and she's
all the way over (in Indiana). I can't be there for her."

Over the years, Keefer has watched Larry's condition deteriorate, and caring
for him is now a round-the-clock job. He can't walk or crawl. He says only a
few words. He's fed through a tube. He takes massive doses of medication
daily. His body can't handle any more surgeries. And last year, his mother,
Michele Barnett, signed a "Do Not Resuscitate" agreement. While some boys
with the disease may live to be 30, Larry has at most three years.

Yet Keefer said that Larry "just smiles at you ... and in his own way he
knows" how much he's loved.

This image of love inspired Keefer on one of her runs last autumn. She
realized she needed to "step out of her comfort zone" in honor of Larry, and
if it meant walking from her home to his to raise awareness, she was willing
to do it. 

"I opened my heart to God and did something I was told to do," she said.
"Larry is one of his angels. (God) was working through me to bring public
awareness and raise money for research."

Preparing to walk was her biggest challenge, Keefer said. She began nine
months of intensive fund raising and physical training, balancing her career
as a bank network administrator with time for her family - three children
and a grandchild. Michele Barnett characterized Keefer as "bound and
determined," from the beginning. Keefer said she often came under scrutiny
from people who told her she was "crazy," was "never going to make it," and
would "only be helping 200 children." 

"We're not brought here just to work, eat and play," Keefer said. "People
need help. I've always been a risk-taker. If God was with me and Larry was
with me, it was meant to be. And I made it."

On a typical walking day, she covered more than 20 miles, drinking lots of
sports drinks to refuel and changing shoes every two hours. As she walked,
she prayed, reflected, enjoyed the beautiful countryside, and as time went
on, began to wonder when the next mile marker would appear. 

Most importantly, she said, she stopped to meet many people along the way,
including two other boys with Lowe Syndrome. In addition, Mikey, a little
boy with spina bifida, struggled to walk the first quarter mile with her. A
poor family in Pennsylvania's Blue Knob Mountains, living in a house of
plywood and Styrofoam, donated $9 that it probably couldn't afford. Police
officers, firefighters, motorcyclists and other drivers contributed to her
cause. People opened their homes, their churches and their lives to her.

"You get really cynical with all of the news, the TV, the media and the way
people act," said Keefer's father, Larry Moss, who trailed her in an RV.
"You think there's not any good left. This opened our eyes to the goodness
of people. It's the most exciting thing we've done in our lives."

Keefer ended her journey with a celebration weekend in Westfield and
Indianapolis that included a community fair, a 5K walk and a rally with the
Indianapolis Colts' cheerleaders. 

She said she plans to return to Bloomsburg with a new passion in her life,
getting more involved in her church, a Bible study, charity work and the
mission field.

"I thank God for letting me open my eyes and for finally coming into my
heart," she said. "I will share that with others and be a better Christian
for that. This isn't the end of my journey. It's just the beginning."

For more information about Keefer's walk or donations to the Lowe Syndrome
Association, contact 600 Mile Walk for Lowe Syndrome, c/o Ann Keefer, First
Columbia Bank & Trust Co., 11 W. Main St., Bloomsburg PA 17815; call (570)
387-4615; or visit www.600milewalk.org online.

# # #

*Schubert is a news correspondent for The Hoosier United Methodist News, a
publication of the Indiana Area of the United Methodist Church. This story
originally appeared in that newspaper.

*************************************
United Methodist News Service
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