For Rachel’s Birthday, my mother requested a “Feel Better Friend” through their website and organization based in Olathe, Kansas. Here is Rachel with her friend who was hand made to look like Rachel. So cool! Rachel turned 16 last week was diagnosed in 2009 with Juvenile Batten Disease, a very rare and progression brain disease which has caused her blindness, cognitive and speech loss as well as worsening memory and swallowing issues.
My name is Kat and I have 4 great kids. I love my Jeep, epic road trips, living in Colorado and working. I am a WordPress Website and Brand Manager, Owner of Geek Media in Denver, Colorado.
My oldest child, Rachel, died at age 16 on April 8th, 2017 from a rare, fatal, brain disease called Batten Disease.