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Goranflos hope to offer children a better quality of life

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By Laura Hagan

Volunteers have raised more than $100,000 to help send two sick children to China for treatment. This weekend and last, Oldham County residents are pitching in to help.

With a Motorcycle Bug Run last Sunday and a street festival planned for Saturday, many local residents are rallying support for Hailey and Carter Goranflo, the children of Miranda and Neil Goranflo.

Hailey, 5, and Carter, 3, both have Late Infantile Batten Disease – a degenerative brain disease that gives children a life expectancy of 8 to 12 years.

Miranda said Hailey was a typical child, until she suffered a seizure at 2 1/2 years old. Doctors first suspected Hailey had childhood epilepsy, and thought she’d grow out of it. During the next few years, Miranda said, Hailey’s health got worse. She began having hundreds of seizures a day, and stopped walking and talking.

In January, Carter had his first seizure. While Hailey’s tests for genetic disorders never revealed Batten disease, Carter’s seizures offered a clue. Miranda said the disease is a brutal one, causing children to lose their vision and become demented and bedridden. There’s no treatment, or cure, in the United States.

Miranda researched the disease and found clinical trials in Oregon and New York. Hailey’s advanced condition prevents her from qualifying for either trial. Carter’s health meets requirements to participate in a trial at Cornell University, although he hasn’t yet been

accepted.

Carter still walks and speaks, but Miranda said when Hailey started having seizures, she lost everything in six months.

“We don’t want to wait six months,” Miranda said.

During her research, Miranda found the Batten Disease Association, and heard about stem-cell treatment in China. Some children treated there are seeing positive results, she said. Treatments are $50,000 each, and Hailey needs three. The family began fundraising in March.

Miranda said before heading to China, her family tried medicines, vitamins and herbs to improve her children’s health. So when they decided to proceed with treatment in China, she said, they didn’t have high hopes.

During her seven-week stay in China, Hailey received stem cells and physical and occupational therapy six days a week. Prior to the trip, she suffered hundreds of seizures per day and used an oxygen tank.

Now, Miranda said, she’s down to five seizures a day or less. And she hasn’t needed oxygen since her third day in China. She grew six inches and gained six pounds.

It could take several treatments, Miranda said, and they plan to take Hailey back in January for her second round. Next time, Hailey will receive more stem cells and gene therapy.

Even though Miranda heard positive things from parents who took their children to China for treatment, doctors thought differently.

“Everyone we spoke to tried to talk us out of going,” she said. “They told us to take Hailey home to be with family to die. And they said if we took her to China she’d die.”

But since the first treatment, Miranda said her daughter’s quality of life has improved. Before traveling to China, Hailey spent five weeks in the hospital, in a state of constant seizing. Miranda said the stem cell treatment is not a cure, but will help to prolong her children’s lives.

Miranda said Hailey and Carter had a one in four chance of getting Batten disease, because she and Neil have the same defective gene. They don’t plan to have more children.

“I couldn’t bring another child into this world and watch them suffer,” she said.

Hailey’s next trip to China is already paid for, and they’ve fundraised $10,000 for her third trip. They’re still fundraising and would like to raise money for Carter to travel to China, in case he isn’t accepted in the New York trial. His three treatments will cost $35,000 each.

From benefit gatherings and yard sales to demolition derbies, complete strangers are raising money for the Goranflos.

On Saturday, the Wayfarer’s Masonic Riders hosted a Bug Run starting at Varsity Pizza in Crestwood. Riders from as far as Alabama participated in a motorcycle ride and attached flypaper targets to their bikes in a competition for collecting bugs during the ride. The event raised more than $500 for the family.

This weekend, a street fair will take place on the courthouse lawn from 4 to 8 p.m. Saturday. Games, food, prizes and music are planned, as well as a silent auction, inflatables for kids, basketball games and more. The La Grange Kiwanis Club will host the event, and proceeds will benefit the Goranflos. Several shops on Main Street are also involved in fundraising, as Hailey and Carter’s grandparents – Jimmy and Debbie Goranflo – are the owners of Sweets on La Grange on Main Street.

Miranda is thankful to residents of Shepherdsville, where they live, and to Oldham County, where her husband grew up, for helping raise money to support the family. She said dealing with her children’s illness is difficult.

“We have good days and bad days and really bad days,” she said. “But for the most part, we try not to think about it.”

A Web site maintained by the family, haileyandcarter.wordpress.com, includes updates about the children’s progress and events planned in their honor. The treatments give her family hope.

“We don’t want to sit around and feel sorry for ourselves, that’s easy to do,” she said. “We focus on one day at a time. We cry when we need to, but for the most part, try to stay positive.”

E-mail us about this story at: lhagan@oldhamera.com.