East Texas Boy Contracts Rare Fatal Disease - KLTV.com - Tyler, Longview, Jacksonville |ETX News

10/29/03 - Longview

East Texas Boy Contracts Rare Fatal Disease

      Three year old Joshua Spencer of Hallsville has the rare condition; Battens disease, a devastating neurological disease that has no treatment and no cure, and is always fatal. Since Dallas doctors diagnosed his condition a week ago, the Spencers have spent countless hours trying to find if any research is being done.

    "We were up for days and days looking on the Internet calling people, begging for information we cried and we prayed for hours and hours and hours... We fell helpless completely helpless" said Joshua's mother Leann Spencer.

    Only 1300 cases of Battens have been recorded worldwide... and the Spencers have only hope that somewhere someone may have an answer,  because the horrible progression of the disease is almost more than the family can bear.

    "To watch him slowly go paralyzed and be bed ridden and have a feeding tube and go blind and not know who I am or his father or sister... is the hardest part to me" says his mother. A normal kid, Joshua loves to play and roughhouse with his sister... but already is showing the effects of the disease... having difficulty walking.

     "One of the things you ask yourself is why me, or why is this happening, and a lot of times theirs no answer...we may never know why ... The good Lord is the only one that knows all things" said the boy's father Paul Spencer. The Spencers want to cherish whatever time they have left with Joshua... because they don't know how much time there is.

       They are not asking for any donations for the family but have set up a fund for Battens disease research. If you'd like to help, you can make a donation by contacting "Texas Bank and Trust of Longview". Tell them you are interested in donating to the Leann Spencer "Hope for Joshua Fund".

Bob Hallmark, reporting.

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