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Batten disease thumbnail of directory

5 people found, showing 1 to 5

To save room on the page we use the term disabled to indicate those with disabilities, special need or a medical condition.


East Lothian ( Scotland )

Jan 2002  female
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: CH3686
Relationship: Mother
Last updated: 09 Aug 2006
Brief summary: NO DIAGNOSIS!!!!!! Mum of a 4 year old little girl who has lost all skills since one years old.

Greater Manchester ( North West )

Oct 2002  male
Family type: two parent family
Siblings: 3
Disabled siblings: 0
Username: seekingacure
Relationship: Sister
Other conditions: None

Last updated: 18 Apr 2012
Brief summary: I have a sick brother who is 9 years old and has Late Infantile Batten Disease. He can no longer walk, talk and is bed-ridden. Just so disheartening and emotionally draining. Would like to offer and receive support for this distressing disease.

location not given

Apr 2008  not given
Family type: not given
Siblings: 1
Disabled siblings: 0
Username: godswill
Other conditions: None

Last updated: 01 Aug 2012
Brief summary: my nephew is suffering from batten disease type 2.v came to knw abt it before a month ago.

Romania ( Rest of Europe )

Dec 2008  male
Family type: two parent family
Siblings: 1
Disabled siblings: 1
Username: dtomcat
Relationship: Father
Last updated: 03 Nov 2015
Brief summary: I am the father of 2 little childs suffering(DNA diagnosed positively) of Batten-CLN2 type. The older one (Vlad Petre) is now 6yrs,11 months,bedridden,not able to see and swallow. Little one(Ana Sofia)3yrs,5months,just diagnosed.

United States of America ( Americas )

Jul 2007  female
Family type: single parent family
Siblings: 3
Disabled siblings: 0
Username: dnyvise
Relationship: Mother
Other conditions: None

Last updated: 21 Jan 2012
Brief summary: I am the mother to Ali, whom is 4 years old. Ali was diagnosed with Battens disease on July 15, 2011 a day that we will never forget. Battens disease is a rare, fatal incurable terminal neurological disease.

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If a UK Support group is available for this condition you can access their details by clicking the above link, search for the condition and click on the "Is there support?" section.

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