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Paula
Altuzarra
From 11/21/1991 until 12/28/2006
Late Infantile NCL
Lived in La Rioja,Spain
elenadl2002@yahoo.es
http://usuarios.lycos.es/hispataxia/ELENA/HOME.htm
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Jordan
Anderson
Born 8/26/93
Died
12/16/2002
Late Infantile NCL
Lived in Toormina, NSW, Australia
Website |
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Ben
Annandale
Born April 28, 1996 and died November 28, 2004
Diagnosed with Late Infantile NCL December 1999
Lived
in Stratford, Ontario, Canada
Bens_1mom@hotmail.com
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Limara
Ashbury
Born 11/25/1981
Died November 28, 2005
Juvenile
NCL
Limara
lived in England-Suffolk
eashbury16@aol.com
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Rhiannon
Bates
Born 16/06/2000
Late Infantile NCL (variant)
Live
in Derry, N. Ireland
Shauna Mellon "Mum's"
email
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Stevie-jo
Beere
Lived from 20/12/1997 to 12th/01 2006
Infantile battens disease
Stevie-jo lived in Essex London, England
steviejo.beere@btinternet.com
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Augusto
Faria Brandâo
Born 02/27/91
Died 9/24/98
Late Infantile NCL
Lived in Uberlândia-MG
Brazil
cabrandao@ufu.br |
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Roslind
Brengosz
Born on 4 September 1989
She lives in Magaliesburg, South Africa
Juvenile batten disease |
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Dylan
Carr
born 5/1/92
died 8/22/02
Late Infantile
lived in Whitby, Ont., Canada |
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Russell
David Cartwright
Born 14/05/1988
Died 19/03/2006
Juvenile Battens
Russell
lived at Ramsgate
Kent England
drcartwright@btinternet.co |
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Paula
Cazorla was born in Madrid in 1990.
Paula has Late Infantile NCL
We live now in Barcelona (Spain) |
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Jessica
Mary Charlton
Born 13th April 1997
Died
25th February 2004
Infantile NCL
She lived in East Yorkshire, England
tracycharlton@tinyworld.co.uk
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Taylor
Joseph Clay
Taylor was born on the 14th of May 1993. He was diagnosed with
Battens disease in Febuary 2006.
He lives in Melbourne, Victoria, Australia.
Taylor's mother is Joanne Clay, and her email address is joanneclay@optusnet.com.au
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Debbie
Crighton
Born 1/24/86
Juvenile NCL
Debbie
lives in Dundee, Scotland |
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Thomas
Anthony Cooper
Born 12/19/90
Died 7/28/01
Infantile NCL
He
lived in Doncaster, South Yorkshire, England
cooper.tony@btinternet.com
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Isabel
da Costa
Born 4/24/88
Died 1/15/99
CLN6 - Variant Late Infantile
Lived
in Portugal |
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Fernando
Henrique Cunha de Deus
Born: 05/09/1988
Juvenile
Lives in São Paulo - São Paulo, Brasil
Father:
Wagner Rossete Cunha de Deus (waguinho@rimar.com.br)
Mother: Lia Soriani Carrilho de Deus (liasoriani@ig.com.br)
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Matthew
Alwyn de Villiers
Born 24/08/2005
Diagnosed with Infantile NCL in December 2006
Lives in Pretoria, South Africa
Only child of Alwyn and Elva de Villiers
elvadev@telkomsa.net |
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Charly
& Rhys Daniels
Charly 4/23/88 - 2/10/99
Rhys 12/28/90 - 12/21/98
Late Infantile NCL
Essex,
England |
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Chelsea
Delottinville
Born 3/16/94
Died 10/12/99
Late Infantile NCL
Lived in Hamilton, Ontario, Canada E-mail |
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Tabitha
Ann Dubbels
Born 2/17/89
Died 3/19/2000
Late Infantile NCL
Lives in Karoola, Tasmania
dubbels@tpg.com.au |
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Kevin
Byrne Duncan
Born 11 November 1999
Passed 15 February 2007
Type INCL
Lived in Helderkruin, South Africa
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Frederik
Egold
Born October 28,1977 - Died February 7,2005
Juvenile
NCL
Er wohnt in Deutschland
Website: www.frederik-egold-memorial.net
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David
Martín Escamilla
Fecha de nacimiento 06/08/98
Muerto en de agosto el 16 de 2004
NCL - 2
Residencia:
Barcelona-ESPAÑA
e-mail:yescamilla@telefonica.net
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Dennis
Fischer
Gebr. 14/04/1992
verstorben 09/04/2004
Spätinfantiler NCL
Wohnort
Ostrhauderfen, Deutschland
e-mail:
dennis14492@aol.com
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Luiz
Artur Souza Fonseca
Born 08/14/1999
Juvenile CLN
Lives in Salvador, Bahia - Brazil
email:
Mother (Ellis) - ellisalmeidaa@bol.com.br
Father
(Luiz) - lmrf42@yahoo.com.br |
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Chad
Forsyth
Born 3/10/91
Died April 11, 2004
Late Infantile NCL
Manitoba,
Canada
http://www.chadshope.com/
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Kotie
Fraser
Born 1/23/96
Infantile
NCL
Lives in Amanzimtoti, South Africa
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Saul
and Savannah Rose Fraser
Born 11/15/01
Infantile
NCL
They live in Dundee, Scotland
markandalana79@hotmail.com
http://www.ssrf-trust.co.uk/
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Charlhes
Garbuio dos Santos
Born 11/23/93
Juvenile Batten disease
Lives in Cascavel, Brasil
EMAIL-DACAR@CERTTO.COM.BR
CONTATO-ANA MARIA GARBUIO |
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Claire
Harrington
She was with us from August 27th 1985
to January 6th 2008
Juvenile NCL
Claire lived in Liverpool, England
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Adam
James Hawthorn
Born Jan 26, 1989
Juvenile
NCL
He lives in Blackfalds, Alberta, Canada
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Seth
Holder born 8/03/07
McKenzie Holder born 10/10/02
Late Infantile Battens
They live in Mandurah. Western Australia
Mom's, Jocelyn Rowe, email address is sethkenzie@hotmail.com
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Wian
van Heerden
Born 23 March 2006
Diagnosed with Infantile Battens on 23 March 2007 (by Dr Lippert
Unisa PTA) Lives in Brakpan, South Africa. He is the youngest child
of Willie & Nadine van Heerden. They have a seven year old daughter
Melissa. Email address: henke@absamail.co.za |
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Lauro
Matheus Hilgert
Born 6/24/93
Infantile NCL
Lives in Itaipulandia, Brazil
elianeph@missal.pr.gov.br |
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Jamie
Ann Huelin
Born: 03/13/01
Late Infantile NCL
Lives in Brantford, Ont
loriann.keeping@sympatico.ca |
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Katie
Hogg
Born on 3rd September 2002
Infantile NCL
Katie
lives
in Scotland
charlenehogg@btinternet.com
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Louise
Jefferson
Born 6/26/88
Juvenile NCL
Lives
in Farningham, England |
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Craig
Johnston
Born 9/4/85
Juvenile NCL
Lives in Broxburn, West Lothian, Scotland
Web
Site and email:
mary-johnston@blueyonder.co.uk |
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Shanade
Jooste
Born 11/14/95 and died 4/26/03
Late Infantile NCL
Lived in Pretoria, South Africa
email
- shanty@lantic.net
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Juandre
Killian
Born 1/9/98
Late Infantile NCL
Lives in Grahamstown, South Africa
email
- juandre@telkomsa.net |
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Michelle
Kortas
Born 3/29/91
Died 11/26/96
Late Infantile NCL, Down
Syndrome
Lived in Auckland, New Zealand
email
-
skort@ihug.co.nz |
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Sheree
on left & Sonya Kuhr
Born 1/11/1984
Sheree died on 23/06/1992
Sonya died on 15/11/1994
The twins lived in Australia |
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Dan
Larsson
Born 3/28/92
Juvenile NCL
Lives in Eslov, Sweden
susannemetso@hotmail.com
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Niels
Lauwen
Born 12/17/91
Juvenile NCL
Lives in Rucphen, The Netherlands
lauwen.vier@home.nl |
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Angie
Natalie Melgarejo
Born 4/14/92
Lives in Berazategui, Argentina
Has variant Late Infantile (CLN6)
website:
http://angie.myphotos.com/angie
parents email: dmelgare@hotmail.com |
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