Garrett the Grand - Batten Fighter

Garrett the Grand - Batten Fighter This page has been set up to provide information about Garrett and his battle with a very rare genetic disorder called Batten Disease.

Unfortunately if you have made it to Garrett's page you have heard of the bad news. Garrett has been recently (in 2014) diagnosed with NCL (CLN1-infantile) or Batten Disease. This disease effects only 30 - 50 individuals a year in the United States and 2,000 worldwide. Within the next days, months and years Garrett will regress and will lose his speech, movement, cognitive abilities and have his life taken too early. He is currently losing vision, is almost blind and has many developmental delays. This disease will steal Garrett's body and mind but for us lucky enough to know Garrett we will always know who he is. If you see Garrett please recognize him and let him share some of the magic we receive daily. If you have questions, please ask, this is relatively therapeutic for us. Our goal is to educate and to have these rare diseases recognized. We need to get appropriate funding to end this unneeded pain for families. Keep an eye out we will be planning events which will be interesting and memorable. (This site is managed by me, Joe, I don't want Nancy to be blamed for my poor spelling and grammar).

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P. O. Box 2
Gilbertsville, PA
19525

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