Rally for Rex
Rex Paul Timko was born on November 24, 2007. A happy, healthy boy until he had his first seizure one month before his third birthday.   After 14 months of recurring seizures, numerous medications and a trip to the Cleveland Clinic; he was diagnosed with Late Infantile Batten Disease.

Late Infantile Batten begins between ages 2 and 4. The typical early signs are loss of muscle coordination (ataxia) and seizures along with progressive mental deterioration. This form progresses rapidly and ends in death between ages 8 and 12.

As yet, no specific treatment is known that can halt or reverse the symptoms of Batten disease/ NCL. However, seizures can be reduced or controlled with anticonvulsant drugs, and other medical problems can be treated appropriately as they arise.  At the same time, physical and occupational therapy may help patients retain function as long as possible.

Rex & his family intend on making spectacular, unforgettable memories with every moment they are granted.  Thank you for taking the time to read his story.


Realize deeply that the present moment is all you have. 

Make the NOW the primary focus of your life.” 



Late Infantile Batten Disease receives almost 
NO FEDERAL FUNDING! 
As close as they are to real treatment for this 
heartbreaking disease, 
none of these experimental approaches can proceed without funding. 
Our goal is to spread awareness by sharing
Rex's story with you.
We encourage you to share his story with others. Together we can make a difference for the future.

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