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Fundraiser Held for Shepherdsville Children with Batten Disease Drucken E-Mail
Batten Disease
Montag, 14. Juli 2008 um 09:00 Uhr
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Source: Wave 3

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.
Zuletzt aktualisiert am Mittwoch, 16. Juli 2008 um 09:23 Uhr
 

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Patienten Berichte

ALS - Mr. Reynolds
ALS - Ms. Brooks
Ataxie - Hr. Arruda
Ataxia - Mr. Blair
Ataxia - Ms. Crowter
Ataxia - Ms. Graf
Ataxia - Ms. Gray
Ataxie - Fr. Jones
Ataxia - Mr. K. Graf
Ataxia - Mr. Knoblauch
Ataxia - Mr. Martin
Ataxia - Mr. Nate
Ataxie - Hr. P. Flynn
Ataxie - Hr. R. Flynn
Ataxia - Mr. T. Graf
Ataxie - Hr. Wallace
Autism - Mr. Lachlan
Autismus - Fr. Maria
Autismus - Hr. Pacis
Autismus - Hr. Wang
Autismus - Hr. Yu
Batten Disease - Mr. Dell'Aringa
Brain Injury - Mr. Anduha
Gehirnverletzungen - Hr. Ashton
Brain Injury - Mr. Blazevic
Brain Injury - Mr. Cui
Gehirnverletzungen - Hr. Hayward
Brain Injury - Ms. McAfee
Gehirnverletzungen - Hr. Nguyen
Cerebral Palsy - Mr. Andrew Ricci
Cerebral Palsy - Mr. Bocskai
Cerebralparese - Hr. Boles
Cerebral Palsy - Ms. Caprioru
Cerebralparese - Fr. Ella
Cerebral Palsy - Mr. Gryphon
Cerebral Palsy - Mr. Lawrence
Cerebralparese - Hr. Nicholas
Cerebral Palsy - Ms. Sosa
Cerebralparese - Hr. Teskey
Cerebral Palsy - Ms. Tahiliani
Cerebralparese - Hr. Phang
Cerebral Palsy - Mr. Will
Epilepsie - Fr. Madura
Epilepsie - Fr. Pinczker
Friedriech's Ataxia - Ms. Maher
Friedriech's Ataxia - Mr. Zachary
Glut1 - DS - Fr. Jordan
Heart Disease - Mr. Maxwell
Huntington - Krankheit - Fr. Arroyo
ION - Mr. Stevens
Muscular Dystrophy - Mr. Russ
MS - Ms. Chen
MS - Hr. Frey
MS - Fr. Glenn
MS - Fr. Helm
MS - Fr. Kay
MS - Hr. Kenneth
MS - Mr. Ozzello
MS - Fr. Sprague
ONH - Fr. Barlett
ONH - Ms. Hallie
ONH - Mr. Justin
ONH - Mr. Lawrence
ONH - Ms. Lilli
ONH - Ms. Manuela
MSA - Mr. Haywood
Parkinson's - Mr. Buckley
Parkinson's - Mr. Brown
Parkinson's - Mr. Budiono
Parkinson's - Ms. Chin
Parkinson's - Mr. Devlin
Parkinson's - Ms. Edwards
Parkinson's - Ms. Kluber
Parkinson's - Ms. Rouen
Parkinson's - Ms. Thomas
Parkinson's - Mr. Woodward
ROP - Shirdesh
ROP - Tatyana
Rett-Syndrom - Fr. Laura
Spinale Muskelatrophie - Fr. Gologan
Spinale Muskelatrophie - Hr. Justin
Spinale Muskelatrophie - Fr. Loredana
SMA - Ms. Nicole
SMA - Ms. Nirma
SOD - Claire
SOD - Ms. Frenette
SOD - Ms. Giulia
SOD - Ms. Megan
SOD - Mr. Peterson
Rückenmarksverletzung - Hr. Aldrich
Spinal Cord Injury - Mr. Allen
Spinal Cord Injury - Mr. Ben
Spinal Cord Injury - Mr. Carson
Rückenmarksverletzung - Hr. Iordache
Spinal Cord Injury - Ms. Jennifer
Rückenmarksverletzung - Hr. Maricelli
Spinal Cord Injury - Ms. Pai
Rückenmarksverletzung - Fr. Radu
Spinal Cord Injury - Mr. Savage
Spinal Cord Injury - Mr. Zuo
Stroke - Ms. Hollis
Stroke - Ms. Jing
Stroke - Mr. Li
Schlaganfall (Kind) - Frl. Farkas
Schlaganfall (Säugling) - Frl. Grecsó
Stroke (Infant) - Mr. Hildko