Community Corner

A Walk For Abby

The parents of a three-year-old East Windsor girl suffering from mitochondrial disease have organized a walk to raise funds for research to cure the disease.

From birth, Abby Sauerhoefer of East Windsor suffered breathing and eating problems. Her parents Carol and Joe Sauerhoefer would not find out how serious her problems were until she started having seizures and spasms at two months old.

“When she was born, she wasn’t thriving,” Carol Sauerhoefer said.

Two years of testing at Connecticut Children’s Medical Center and an Atlanta hospital led to the conclusion that Abby, now three years old, suffers from mitochondrial disease. She still suffers from some seizures, cannot walk, talk, speak or sit up, and gets nourishment through feeding tube.

According to the Foundation for Mitochondrial Medicine, Mitochondrial disease means the power plants in cells don't function properly. When that happens, some functions in the body don't work normally. It's as if the body has a power failure: there is a gradation of effects, like a 'brown out' or a 'black out'.

With Abby’s ordeal, the Sauerhoefers decided that it would be a good idea to raise money to help fund research in mitochondrial diseases. In a few short months they have organized Abby’s Walk, which takes place on Saturday.

The three-mile walk will start at , where Abby is enrolled in the pre-school program. She is helped by a LPN and paraprofessional to be integrated into the regular class. Abby enjoys going to school  and being around the students, who have embraced her as well.

“She loves to be around children, loves music and loves to be read to,” Carol Sauerhoefer said. “It’s amazing how the kids love her.”

Another girl the Sauerhoefers met in Atlanta named Olive, who suffered from Leigh’s Disease, a mostly fatal mitochondrial disease, became an inspiration to them.  After Olive began receiving drug injections and seemed to being doing better, the Sauerhoefers were optimistic. They found out later that Olive died from her disease.

That experience prompted the Sauerhoefers to consider doing fundraising to help fund research that may benefit Abby and others. With help from the Foundation for Mitochondrial Foundation, the Sauerhoefers were able to organize the walk and publicize it by end of January.

“We felt we needed to do something more,” Carol Sauerhoefer said. “We were just taking care of (Abby), not helping her.”

The research could help lead to cures for autism, muscular dystrophy, or Parkinson’s Disease, she said.

The Sauerhoefers have been appealing to various people, businesses and organizations in the community about the walk and being sponsors.

Joe Sauerhoefer recently told a meeting of the East Windsor Rotary Club that he has been surprised by the reaction of people and businesses they have approached. Given the tough economy, he said he thought businesses might be reluctant to donate money.

“What people have done is outstanding,” Joe Sauerhoefer said.

The Sauerhoefers had set a goal of raising $10,000 and by the beginning of last week they had already raised $24,000. The money is being donated to the Foundation for Mitochondrial Medicine. They anticipate more than 100 walkers on Saturday.

With the success they have experienced in the walk's organization, the foundation has decided to create an Abby Sauerhoefer Fund for specific research to help her, Carol Sauerhoefer said.

“I didn’t know if it would take off,” Carol Sauerhoefer said. “I feel like my heart has gone to a place it’s never been.”

East Windsor Public Schools have been helpful in the effort, Carol Sauerhoefer said. From the principals of all three schools to the students who have eagerly offered to help with, and participate in the walk.

Abby’s older brother Tim Sauerhoefer has seen that support at , where he is a sophomore. Tim said everyone in school has been telling him they are coming to the walk. The support from fellow students and the whole high school community has been there from the start, he said.

“As soon as I said something to students, the whole room just shouted out and asked what they could do to help,” Tim Sauerhoefer said.

Students at are also helping with the effort. Five of Abby's cousins, who attend St. Bernard's, arranged a separate walk-a-thon for fellow students on Thursday, April 28 around the perimeter of the school on Pearl Street in Enfield. Members of the school community are being asked to make a $2 minimum donation to participate. 

Abby continues treatment at Connecticut Children’s Medical Center and has been making periodic trips to Atlanta for treatments with Dr. D. John Schoffner, the founder of the Foundation for Mitochondrial Medicine, Carol Sauerhoefer, said. It has be one year since Abby has had to stay in the hospital, she added.

Abby’s progress has been slow, but she’s becoming more interactive, makes better eye contact, and she smiles more, Carol Sauerhoefer said.

“Everybody’s normal is a little different and this is our normal,” she said.

Registration for the walk begins at 8:30 a.m. The walk begins at 10 a.m. and the route will be Rye Street north to Main Street, right at Depot Street, right on Perry Lane, right on Reservoir Avenue and back to the school.

The registration fee is $20 for adults and $10 for kids 12 years and older.

There will be  a raffle/silent auction for:  a flat screen TV, four front row orchestra seat tickets to West Side Story at The Bushnell in Hartford, spa and hair salon gift baskets with gift certificates, wine baskets and more.

Additional information about the walk can be found on the web and Facebook.

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