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Monroeville family builds team for upcoming walkathon

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What: United Mitochondrial Disease Foundation Energy for Life Walkathon

When: June 1

Where: North Shore at Heinz Field Lawn, 100 Art Rooney Ave., Pittsburgh, PA 15212

Details: All proceeds will help the United Mitochondrial Foundation (UMDF) provide support, education and research toward a cure for mitochondrial disease.

For more information: www.energyforlifewalk.org/pittsburgh

Wednesday, May 8, 2013, 9:00 p.m.
 

Amanda Butler knew something was wrong when her son didn't bounce back from the flu several years ago.

“It took a long time for him to recover,” said Butler, 36, of Monroeville about her son, Layton Butler, now 15.

The Butlers were living near Macon, Georgia, when Layton got sick in 2008. After two years of testing, the youngster was diagnosed with mitochondrial disease.

The news got even worse for the family. During attempts to diagnose Layton, Amanda Butler, who also had become ill, underwent a muscle biopsy that determined she has the gene for mitochondrial disease. Both mother and son in 2010 were diagnosed with mitochondrial disease.

Daughter Katy Butler, 18, also became ill after her graduation a year ago and was diagnosed with the disease as well.

Mitochondrial DNA can only be passed on from the mother, according to the United Mitochondrial Disease Foundation (UMDF), based in Plum.

Amanda Butler said she and her children suffer with constant fatigue, muscle pain and gastrointestinal problems, among other symptoms.

The family last year decided to move to the Pittsburgh area after Dr. Amy Goldstein, a pediatric neurologist at Children's Hospital of Pittsburgh, began treating Layton Butler. Goldstein also is a member of the UMDF.

Amanda Butler said she and her children continue to have health problems resulting from the disease.

“The battle is getting doctors to understand it,” Amanda Butler said.

With an eye toward getting more attention to the disease and funding for a cure, Amanda Butler and her family members are putting together a team for the United Mitochondrial Disease Foundation Energy For Life Walkathon on June 1.

“We hope to have at least 15 to 20 people in the race,” Amanda Butler said.

The family's team is “BUTLER'S pitching 4 a MITO cure.” Those interested in walking can register at www.energyforlifewalk.org/pittsburgh.

“We are huge baseball fans,” Butler said.

There is no cost to participate in the walk. Donations also can be made by accessing the website. Amanda Butler said all proceeds go to the UMDF.

Butler said those interested in walking for the Butlers' team also can contact her at 412-374-7250 or 412-689-2950.

Karen Zapf is a staff writer for Trib Total Media. She can be reached at 412-856-7400, ext. 8753, or kzapf@tribweb.com.

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