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Monday, Sep. 15, 2014

Hoping to find a cure for Abby

Tuesday, October 30, 2007

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Abigail Layne Hilbert
By IVY JACKSON

Times Staff Reporter

Although children diagnosed with Dravet's Syndrome, a form of epilepsy, usually face an unfavorable outcome, 14-month old Abigail Layne Hilbert's family and friends are looking to the future with hope.

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"Our ultimate goal is to create a foundation to help find a cure for this terrible disease," Benefit Coordinator Missy McCullough said about the upcoming fundraiser benefit at Greencastle Moose Lodge to help assist Abby's family with her special needs. "We want to do what we can to help take care of Abby."

Born with an undiagnosed gene mutation in July 2006, Abby experienced difficulty breathing and a racing heartbeat which required she be transferred to a larger hospital facility. Although she was treated and able to go home, Abby spent the next six months in a lethargic state.

In February 2007, Abby was hospitalized with her first noticeable seizure. Treated with medication and sent home again, doctors were unaware that Abby was experiencing multiple seizures that could not be seen without a trained eye.

Some of the types of seizures Abby was experiencing was eye twitching, limb stiffening and staring off into a distance.

The seizures continually became worse with each month that passed, but doctors at Riley Children's Hospital continued to run medical and genetic tests.

In April, the worst of Abby's seizures, lasting for more than six hours, occurred before the results of the genetic tests were completed. Doctors believed that Abby's symptoms were those of Dravet's Syndrome, but, without conclusive results, they were unable to medically treat her for the disease.

In September, doctors were able to officially diagnose Abby with Dravet's Syndrome, which meant that Abby would have to be watched even more closely than before.

Abby's mother, Brittany Buis, has had to cut back and work only part-time at the Wal-Mart Distribution Center in Greencastle.

"It's just heartbreaking to watch Abby go through this," Buis said. "She's so little and doesn't understand what is happening to her."

Brittany's co-workers and friends, who had shared in the joy of Brittany's pregnancy, decided to help ease the financial burden facing the family.

"We work with Brittany, we were with her while she was pregnant with Abby," McCullough said about why she, Cassandra Burns, Judy Zdrojewski, Brittany Conrad and Deb Terhune wanted to organize the fundraising efforts. "We love Abby and want to do whatever we can to help make her life better."

Buis is so grateful for the help, she said it is hard to put her gratitude into words.

"It's just wonderful that there are so many people out there who are willing to help," Buis said. "I wouldn't be able to do this by myself and try and take care of Abby the way she needs to be."

The group previously had a bake sale and is now organizing the benefit dinner at Greencastle Moose Lodge on Nov. 3.

"We have a band that will play, an auction and are selling raffle tickets," McCullough said, adding that the group is still accepting raffle items to assist in the fundraising event. "We hope that we have a lot of people who will come out and help Abby."

To learn more about Abby or Dravet's Syndrome, log onto the family organized website at www.freewebs.com/abbysjourney/index.htm.



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