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Fundraiser held for Shepherdsville children with Batten Disease

15 July, 2008, by Lindsay English

LOUISVILLE, KY (WAVE) - WAVE 3 continues to follow the story of the Goranflo family. With mom Miranda and 5 year old Hailey in China seeking treatment for Hailey's Batten disease, the rest of the family was working hard Saturday to raise money. As WAVE 3's Lindsay English reports, they are trying to help 3 year old Carter who suffers from the same rare condition.

The exhaustive fundraising efforts are nowhere near over. The Goranflo family estimates it needs to raise about $250,000 to get complete treatments for both Hailey and Carter. While they have made amazing headway, their goal hasn't been reached yet.

Saturday afternoon in Shepherdsville, volunteers put together a fundraising event. Organizers believe the heat may have kept many folks away, but several more events are planned down the road.
Meanwhile, Neil Goranflo remains in constant contact with Miranda and Hailey as she gears up for her first stem-cell treatment in Beijing, China.

"They've been doing some tests and some blood on her since they've been there some minor testing, they're going to have a meeting Monday about her stem cells and Tuesday she'll have her first injection," says Neil Goranflo, Hailey & Carter's dad.

"If we don't get help for these kids, they're not going to lose one, they're going to lose both their kids and they can never have anymore cause they both carry this gene," said Shirley Clemmons, the event organizer.

If you want to follow the Goranflo family's story as they continue their stay in China, or want to know about other upcoming benefits, just click on the highlighted link: Goranflo Fundraising Events.

Read original article, click here.

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