BDSRA: Batten Disease Support and Research Association
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faces
  These are our children, the faces of Batten . . .  Q      R      S       T 
Shiv Rana
Shiv Rana
Born 7/22/2000
Variant Late Infantile
Lives in Vienna, Virginia
suneeta@lnf.com
Erin Adell Reese Erin Adell Reese  
Born 1/30/93
Died  6/1/01 
Late Infantile  
Erin lived in Aberdeen, SD
 
Brittany L. Robinson Brittany L. Robinson
Born 5/6/84
Juvenile
Lives in Woodbridge, VA
email: museuman@peoplepc.com
 
Amber Royalty

Amber Royalty
Born 3/15/81
Juvenile NCL
Lives in Ursa, IL

 
Sandy Royalty
Lived 10/5/85 until 9/1/07
Juvenile NCL
Lived in Ursa, IL
 
Sarah Royalty

Sara Royalty
Born 10/5/85
Juvenile NCL
Lives in Ursa, IL

 

 

Elizabeth Roepke Ruschel Elizabeth Roepke Ruschel
Born 1/20/95 and died 5/23/01
Late Infantile

Lived in Lakewood, Ohio
KRoepke@juno.com
Victor Salladin II Victor Salladin II
4/16/72-5/30/84
Late Infantile
He lived in Bradford, NY

Victoria Salladin Victoria Salladin
4/25/70 - 9/10/76
Late Infantile
She lived in Bradford, NY
 
Charlie Scanlon Charlie Scanlon
Born 5/1/81
Died 12/26/03
Juvenile
Lived in Dyer, IN
 
Doug Schmidt Doug Schmidt
Born 3/9/79
Died 8/9/07
Juvenile
Lived in South St Paul, MN

Nathaniel David Schwartze Nathaniel David Schwartze  "Natey" 
Born 12/16/91
Died  08/03/00 
Late Infantile 
Natey lived in Springfield, Missouri 
Visit the Natey site
Jamie and Kelli Seely Jamie and Kelli Seely (left to right)
Jamie was born 1-24-97, died 3-5-2005
Kelli was born 5-29-98,
died 3-6-2005
Late Infantile NCL
They lived in Phoenix, AZ
Mom's e-mail is lisaseely71@yahoo.com
David Jeremy Seelye David Jeremy Seelye  
Born 5/17/85
Died1/21/02
Juvenile

Lived in Lakewood,  WA
bkdskseelye@msn.com
Korry Sharp Korry Sharp
Born 6/3/93
Type: NCL5
Lives in Vacaville, CA
Rachael Sharp Rachael Sharp
Born 4/30/96
Born 6/3/93
Type: NCL5
Lives in Vacaville, CA
Taylor Shaver Taylor Shaver 
Born  8/3/93 
Died  1/2/99 
Late Infantile
Lived in Las Vegas, NV
Bill Shaw

William E. Shaw
Born January 18, 1976
Died
January 27, 2006
Juvenile
Bill lived in Everett, PA

Michele Sheridan Michele Sheridan 
Born April 6,1982
Juvenile NCL   
Lives in Plymouth, Michigan
Kesley Shuros

Kesley Shuros
Born March, 22 1986
Infantile NCL
Kesley lives in Eagan, MN
Read Kesley's Story

Linda Sivulka  
Lived 12/9/64 until 5/9/07   
Juvenile  
Caledonia, Wisconsin
mom's email-soo43@msn.com
Shelley Marie Smith Shelley Smith  
Lived March 13, 1984 to January 27,2005 with Juvenile NCL   
Shelley blessed many in Ooltewah, TN
pam_hugh@hotmail.com
Emily Anne Smith Emily Smith  
Born November 10, 1987  
Juvenile NCL  
Emily lives in Ooltewah, TN pam_hugh@hotmail.com
Jackson Smithers Jackson Smithers
He lived from February, 12 2002
until April, 27 2005
Parrish , FL
Macayla Smoak Macayla Smoak
Born 5/22/2001
Infantile NCL
Lives in Anderson, SC

Website: www.smoaksignal.com
Email: jeff@smoaksignal.com
Shaun Smyser
Lived from 3/6/92 to 12/11/98
in Stockton, IA

Email: tnt5610@iowatelecom.net
Erika Spaide

Erika Spaide
Born July 14, 1992
Juvenile NCL

Lives in Miami, FL

Joshua Paul Spencer

Joshua Paul Spencer
He lived 1/28/2000 until 6/2/2007
Late Infantile NCL
Longview, TX.

Samantha Stamply Samantha Stamply  
Born January 30, 1981 
Died 4/26/98  
Juvenile NCL  
Lived in Pascagoula, MS
Cassandra Steele

Cassandra Steele
Born 7/17/88 and died 9/27/02
Juvenile
Cassandra lived in Lakeview, AR

Crystal Mignon Steever-Frisbie Crystal Steever-Frisbie  
Born 6/9/88
Died 3/30/95
 
 
Late Infantile NCL  
Crystal lived in Yakima, WA 
Holly Stewart

Holly Stewart
Born on 7/28/01 and died 4/11/05
Infantile
Holly lived in Lynn Haven, FL
website: www.angelholly.com

Gretchen Gabrielle Streett Gretchen Gabrielle Streett 
Born  February 11, 1951 
Died  4/15/67 
Juvenile NCL 
Lived in Baltimore, MD
Cindy Susavage Cindy Susavage 
Born 7/14/93 
Died 9/25/99 
Late Infantile NCL 
Lived in Quakertown, PA
Lindsey Susavage Lindsey Susavage 
Born  4/18/95 and died 6/22/03 
Late Infantile NCL 
Lived in Quakertown, PA
Emily Thompson

Emily Thompson
Born 8/29/79
Died 2/23/04
Juvenile
Lived in Monroe, MI
email: scthompson@chartermi.net
Juvenile

Rode Tinker Rode Owen Tinker
Born 9/23/98
Died 5/10/01
Infantile NCL
Rode lived in Farmington, NM
Grant Tiszai Grant Tiszai  
Born 6/20/80  
Died  02-25-00 
Juvenile NCL  
Lived in Mooresville, NC
Bethany Trimmer Bethany Trimmer 
Born December 26, 1993 
Died January 15, 2001 
Late Infantile NCL 
Bethany lived in Sharpsburg, MD
Derek Trimmer Derek Trimmer 
Born  April 28, 1995 
Late Infantile NCL 
Derek lives in Sharpsburg, MD
Erin, Caitlin and Meaghan Vance Erin, Caitlin, and Meaghan Vance 
Tracy Walsdorf Tracy Walsdorf  
Born 10/15/71
Died 1/16/97
 
 
Juvenile NCL  
Tracy lived in Kenner, LA
McGee Walsdorf McGee Walsdorf 
Born 7/30/70
Died 10/29/87
 
 
Juvenile NCL  
McGee lived in Kenner, LA
Alex Everett Warnshouse Alex Everett Warnshouse  
Born May 15, 1979  
Died 1/21/91  
Late Infantile NCL   
Alex lived in Canandaigua, NY
Hunter Brittney Watkins Hunter Brittney Watkins
Born 7/13/2000
LINCL
She lives in Evanston, WY

http://www.hugs4hunter.org/
Tyson Weaver

Tyson Weaver.
Born November 18, 1974
Died Sept.12, 2004
Juvenile NCL  
Lived in Fort Collins, CO

Amber Whaley

Amber Whaley
Born January 13, 1984
Juvenile NCL

Lives in Memphis, TN
Web page

Ryan Andrew White Ryan Andrew White  
Born January 16, 1988  
Died  7/13/01 
Late Infantile NCL  
Ryan lived in Walnutport, PA
Carolyn Wilhelm

Carolyn Wilhelm 
Born  9/24/75 
Died  3/14/98 
Juvenile 
Carolyn lived in Cincinnati, OH

Martin Williams

Martin Williams
Born April 2, 1996
Died 2/27/05
Late Infantile
Lived in Westmiter, CA

Amy Wilson Amy Wilson  
Born 8/13/91
Died  6/30/01    
Late Infantile NCL  
Amy lived in Cordova, TN
Logan Witt

Logan Witt
Born October 9, 1997
Late Infantile NCL
Logon lives in Heber Utah
webpage:
www.wittwarriors.com

Tyrell Witt

Tyrell Witt
Born October 9, 1997
Late Infantile NCL
Tyrell lives in Heber Utah
webpage:
www.wittwarriors.com

Lisa Young Lisa Young
Born 1/13/81
Died 11/29/95
Late Infantile NCL
Lisa lived in Milmay, NJ
Amy Zieroff
Born 12/9/76
Died 12/2/96
Juvenile
Lived in Toledo, OH

Doug Zieroff
Born 4/15/74
Died 1/26/05
Juvenile
Lived in Toledo, OH

 
 
 


To enter your child(ren) in our Faces of Batten site, either:

1.  Send a photo and to:

Lance Johnston
c/o BDSRA
120 Humphries Dr., Suite 2
Reynoldsburg, OH 43068

with the information for the web page. 

Or preferably ...

2.  E-mail an electronic photo (.jpg, .tif, .pcx or .bmp) as an attachment
with the information to
Lance Johnston.

THESE PHOTOS ARE FOR VIEWING FROM THIS WEBSITE ONLY. THEY MAY NOT BE COPIED, REPRODUCED OR USED IN ANY OTHER MANNER WITHOUT EXPRESS WRITTEN CONSENT OF THE BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION. LEGAL ACTION WILL BE TAKEN TO THE FULL EXTENT OF THE LAW FOR ANY UNAUTHORIZED USE, REPRODUCTION OR COPYING OF THESE PHOTOS.


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