BDSRA: Batten Disease Support and Research Association
Batten HOPE logo
faces 
These are our children, the faces of Batten . . .   I      J       K      L    
Sarah Inks

Sarah Inks
Born in July 7, 1994
Sarah lives in Bellevue, Nebraska
Her Website is sarahinks.com

E-mail mom, sueinks6@cox.net

Chennelle Anne Lenae Jaramillo  Chennelle Anne Lenae Jaramillo 
Born October 11, 1985
Died January 26, 1996
 
 
Late Infantile  
Chennelle lived in Portland, Oregon USA
mom's e-mail: monijolica@comcast.net
Rechelle Leah Jaramillo Rechelle Leah Jaramillo 
Born January 23, 1983
Died October 5, 1990
 
 
Late Infantile  
Rechelle lived in Portland, Oregon USA
mom's e-mail: monijolica@comcast.net
Barry Jenkins


Barry Michael Jenkins
October 12, 1989 - April 23, 1998
Infantile Batten
Barry lived in Port Saint Lucie, Florida

Jamie Marie Jersha Jamie Marie Jersha  
Born 9/3/87
Died 12/8/93
 
 
Late Infantile  
Lived in Bartlett, IL
Elizabeth Johnson Elizabeth Johnson  
Born 3/7/87  
Juvenile  
Lives in Nevada City, CA
Kalee Johnson Kalee Johnson
Born 02/22/84 and died 4/14/03 of
Juvenile NCL
Lived in Sioux Falls, SD kaleehome@aol.com
Lorena Johnston Lorena Johnston  
Born 2/7/71  
Died 9/7/93  
Juvenile NCL  
Lived in Reynoldsburg, OH
Hilliary Jones Hilliary Jones-Mata
Born 4/10/92
Juvenile NCL
Lives in Jacksonville Florida
see penniesfromheaven

email mother, deborah_mata@yahoo.com
Jarret Jones Jarret (J. J.) Jones-Mata
Born 8/26/90

Died 8/15/03
Juvenile NCL
J.J. lived in Jacksonville Florida
see penniesfromheaven

email mother, deborah_mata@yahoo.com
Ryan Michael Kennedy Ryan Michael Kennedy 
Born  5/4/80 
Late Infantile 
Lives in Mechanicsburg, PA
Daniel Lewis Kerner Daniel Lewis Kerner
Born 1/13/2000
Diagnosed 9/13/2004
Late Infantile
Lives in Orange County, CA
email: Ibonline@AOL.com
Angela Suzanne Kervin Angela Kervin  
Born 1/29/81  
Juvenile NCL
Lives in Fairhope, AL
Mom (Alice) email: ladyconure@hotmail.com
Kristopher Michael Killebrew-Ross Kristopher  Michael Killebrew-Ross   
Born 7/6/93
Died 7/24/01
 
Late Infantile  
Lived in San Diego, CA 
LUV2ROOF@aol.com
Bret Killen

Bret Killen  
Born 11/04/84
Died 05/31/04
   
Late Infantile  
Brett lived in Ottawa Ohio

Jamie Louise Killion at  2 yr old Jamie Killion
Born 5/1/86
Died 6/20/02  
 
 
Late Infantile
Lived in Rockford, IL
vickikillion@aol.com
Taylor Edwards

Taylor King
Her birthdate is 8/19/98
Infantile NCL
She lives in Charlotte, NC.
visit
www.taylorstale.com
sister - laura@taylorstale.com

Julie Ann Klee Julie Ann Klee  
Born 11/16/82 
Died 2/25/93  
Late Infantile NCL  
Lived in Atlanta, GA
Levi T. Knowles Levi T.  Knowles
Infantile
October 2, 1977 -  February 15, 1989
Lived in Port Townsend WA
 
Wayne Lanham Wayne Lanham 
Born  5/18/67 
Died  3/9/99 
Juvenile 
Lived in Chelsea, OK

Justin Laven
Born 1/7/94
Died 11/5/99
Infantile
Lived in Richfield, MN

Demarjian K. Lee Demarjian K. Lee
Born:May 27, 2003
Died:October 20, 2005
Infantile
Lived in Huntsville, AL
Julie Ann Leffler Julie Ann Leffler  
Lived 3/12/83 to 12/25/05
with Juvenile NCL  
in Raleigh, NC
Stephanie Leis Stephanie Leis  
Lived 5/12/80 to 11/8/06   
Juvenile NCL  
Lakewood, NY 
njangelo@madbbs.com
Zane Maximus Lewis Zane Lewis
Born December 19,2003
Died November 19,2005
Infantile NCL
rettajolewis@yahoo.com
Isabelle Levis Isabelle Levis 
Born  11/22/94
Died  03/10/04  
Late Infantile 
Isabelle lived in San Francisco, CA
Brielle Lindner Brielle Lindner
Born 11/5/01
Died 6/19/04
Infantile
Lived in Pitman, NJ
www.brielle-moment.com
Ginny Lloyd Ginny Lloyd  
Born 12/26/90
Died 8/22/04
 
 
Late Infantile NCL  
Lived in Lancaster, SC
Chris Lombard Chris Lombard  
Born 4/9/74
Died  4/7/01
    
 
Juvenile NCL  
Lived in Slidell, LA
Michael Lowery Michael Lowery 
Born  12/25/94 
Juvenile 
Lives in Chicago, IL
Kevin Michael Lumm Kevin Michael Lumm 
Born 6/17/83
Died 8/12/03
 
Juvenile NCL 
Lived in Hagerstown, MD
 


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

1.  Send a photo and the information for the web page to...

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

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.


Return to Home Page | BDSRA Services & Chapters | About Batten Disease | Faces of Batten | What's New? | Related Sites | Contact BDSRA | How To Join BDSRA 

BDSRA Home Page