Butterflies, Babies and Tornadoes

This weekend, the EB (Epidermolysis Bullosa) community lost one of our smallest icons. Tripp Roth died in his mother’s arms. He was two and a half. Tripp had the Junctional form of EB, the deadliest form.

I may have provided a link to her blog this past October, but if you’re interested in reading, here is a link to his Legacy page, which links back to Courtney’s blog.

His funeral is scheduled for tomorrow.

****

In other EB news, a US version of this documentary aired over the weekend on TLC.. however, I must admit I like the UK version MUCH better. The narrator even pronounced Epidermolysis Bullosa correctly (which, unfortunately, I cannot say about the US narrator).

Watch.. and learn more.

 

Advertisements

About gespurr

Emily was born in Southwestern Louisiana and has moved over 20 times in her life through nine different states. Most of her life was spent in the Twin Cities of Minnesota, where she met her husband and had her only child. Both she and her husband are also only children. She graduated from Stillwater (MN) High School in 1992 and from the University of Wisconsin in 1997 with a BS in Journalism. Three years later, she met her husband, George, and they married in 2002. Their daughter, Kathryn, was born early in 2004. She relocated with her family back to Arkansas in 2005 after being away for 30 years. She currently works as a customer service representative for a wireless company and lives in North Little Rock. When not taking care of her daughter she is either cooking, working, cleaning house, sewing, gardening, knitting, crocheting hiking, traveling or spending time with her husband.

Posted on January 17, 2012, in Current Events. Bookmark the permalink. 1 Comment.

  1. I went back and read a lot of her blog entries from the very beginning. What a sad, yet inspirational story. I hope that sweet baby’s passing adds some urgency to addressing this disease. And after watching his drumming videos — wow. That baby boy had some serious rhythm.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: