"Safe was dark."

Last week, our class had the privilege of reading a story in our literature book about a little girl, Logan Williams, then 3, who was diagnosed with a rare genetic disease called XP. Of the roughly 1,000 people worldwide with this condition, any exposure to the sun's UV rays can lead to deadly skin cancers, making days in the sun - without proper protection - an impossibility.

In our story, we read a short clip of Logan's life and the challenges surrounding her disease. Thankfully,  a "cool suit" made by NASA allowed her to play outside once again. 

Students were so fascinated about XP and Logan's story, that I felt compelled to do a little digging to help answer all of their burning questions. I found and shared the link to an XP Family Support group, http://www.xpfamilysupport.org. There we saw a 2010 newsletter which featured photos of a teenage Logan, along with her younger siblings, also diagnosed with XP. The more digging and sharing we did in class, the more questions students had. So, I thought, why not go directly to the source: Logan herself.

Students were assigned to write Logan a letter, asking her at least three quality questions related to XP. The letters were heartfelt, caring and well written. 

A little more digging, and I was able to contact Logan's parents! They gave me her mailing address and the 'OK' to send Logan all of our "fan mail"! A summary of the project will also be included in the XP Support Group's newsletter "Night Times." The students are beyond thrilled about this! 

The project has also prompted the purchase of a young adult novel, A Cool Moonlight, featuring a character with XP, to be included in our library. (A big thank you to Mrs. Bock, our librarian, for making that happen!)

Stay tuned for details about our story in the XP newsletter, but for now, enjoy this touching essay, written by Logan Williams, now 18, about her XP journey. You'll see just why so many students at MMS have been inspired by her life. Logan's Story