Hallsville Child Hopes for Battens Research - KLTV.com - Tyler, Longview, Jacksonville |ETX News

01/18/04 - Longview

Hallsville Child Hopes for Battens Research

         A Hallsville boy could benefit from some new research into a rare disease. He's bright and energetic like most children, but 3 year old Joshua Spencer has battens disease, a disease that slowly destroys motor skills, the ability to speak and often ends blindness.

     It has no treatment and no cure and its always fatal, and it's been agonizing for his parents. "I remember all the times that i spent with my dad growing up and if i was to lose him , i wouldn't get to do with him all the things i did with my father" says Joshuas father Paul Spencer.

  Joshuas was diagnosed last year and since then they've held numerous fundraisers to create awareness of the disease, and last week the Spencer got some good news on the Internet, one doctor in New York was doing research on battens and was offering a clinical trial.

    "There is someone working on the disease at least there is a little bit of hope, if he never got any worse we would be happy with him just like this" says mother Lee Ann Spencer. But the Spencers are not the only family with their hopes riding on this research, there are 20 children in north America with battens, and the trial will accept only 10.

    "If Joshuas not chosen it would be devastating it would be gods will we've come to that realization already... But it bumps someone off if Josh gets chosen... Its horrible" says Lee Ann. If chosen Joshua would undergo a 3 year clinical trial, that would involve gene therapy where an enzyme would be injected into the brain to offset the effects of battens... And hopefully give him a new life.

   The Spencers are waiting on F.D.A. Approval and the selection process. Bob Hallmark reporting.

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