-The Batten Journey-
-A 2,500 Mile Run Across The United States of America-
-To Raise Awareness and Funding to Help Find a Cure for Batten Disease-
-San Diego, CA to Jacksonville Beach, FL-
-Pacific Ocean to Atlantic Ocean- Coast to Coast-
-February 28th, 2011 to July 9th, 2011-
-Noah Coughlan- Family Childhood Friend of Catie and Annie Allio
What is Batten Disease? Neuronal Ceroid Lipofuscinosis Batten Disease is a genetic, childhood neurological degenerative brain disease. Batten Disease causes blindness, seizures, cognitive and motor loss, and dementia. Children become bedridden and unable to communicate.
Batten Disease is always fatal.
Although Catie has lost her battle to Batten Disease. Annie (14 years) is still battling the symptoms of this deadly disease on a daily basis.
Annie is unable to see the beauty of Spring, or the faces of a family that love and care for her. She cannot manage without her 24 pill daily regime to help with symptoms such as seizures, psychotic episodes (such as violent outbursts, self infliction, delusions, and hallucinations), dementia, cognitive and motor loss, etc. Annie is following her sister Catie's footsteps....she, too, will lose all of her independent abilities.
They are Why I RUN.
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