USUALLY on Phriday I include this Disclaimer....
*** DISCLAIMER: In honor of it being Phriday, and in rephusal to submit to boredom, I have decided that the Letter F shall phrom here on out be replaced with a PH (except phor in pictures, which I have no control over)***
Today however, I am not going to abide by my own rules. * GASP * But I have something very important to post about today.
Tomorrow is the beginning of Batten Awareness Days. Consider this your Personal Invitation!!!
Oh? What? You didn't know what Batten is? Yeah, unfortunately neither did my family when my nephew Jacob, now 6 years old, was diagnosed with it. Jacob has been diagnosed with a rare degenerative disease called Neuronal Ceroid-Lipofuscinoses (NCL). Also referred to as Batten Disease. It is believed that he has an unknown variant of the late infantile form (LINCL). Currently there is no cure for this and Jacob is now considered terminally ill. He is unlikely to make to the age of 12 years old.
Although it is unlikely that they will find a cure in time to help Jacob, our family is doing everything we can to raise awareness about this disease to help other families with children who are battling the same illness. PLEASE take a moment to look at their website and become a fan of his page as well as share it with someone you know to get the word out there.