Batten Disease Awareness Day
The day is here. The day where we come together as a community and advocate for those affected by this awful disease. We ordered shirts for everyone in the family, including James (though it does look like a dress on him) and wore them to church this morning.
Mom and dad’s Sunday school class showed up wearing orange, which is the official Batten Disease color. Apparently, the class sent out an email to everyone except mom and dad asking them to wear the shirts on Sunday in honor of James. How cool is that? Talk about a Christian community.
It’s funny though, James’s favorite color is orange, his favorite thing to do - riding the ATV - is orange, his garbage trucks are orange, I’m seeing a trend here…
And before I realized that orange was the official color, I made the website orange in honor of James’s favorite color.
Here is the link to the fundraising page that is run by the BDSRA. I’ll also put a link up top on the main links for those who don’t see this journal post. All funds go towards finding cures for this disease and possibly saving James’s life!
Thank you for all you do for us! Much Love!