Darlene and Randy Royalty lost one daughter to Batten Disease in 2007 and lost two others this week.   I really don’t have the words to describe what I am thinking.  The heartache goes so deep, but then to have it twice within a few days, especially this close to Christmas.  Damn. My heart goes out to them, what do you say that hasn’t been said a hundred times.  I wish we lived closer so that we could just drive over and give a hug,  not even say anything, just be there.   Damn.


I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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