First off let me introduce myself. My name is Lacy, I am NOT Ian's mom, just a very close friend of the family. I am number two on Ian's friends list (number 1 is Ian's Mom, Delicia). This page is dedicated to an 9 year old little boy by the name of Ian Swarr who lives in Washington Boro, PA. Ian has a rare skin disorder called Epidermolysis Bullosa (EB). A little about EB...patients have skin as fragile as a butterfly's wing which can blister at the slightest touch...even from a mother's cuddle. Normal day-to-day life can cause constant pain and scarring, which, in the worse forms, leads to eventual disfigurement, disability and often early death. As a consequence, any activity that rubs or causes pressure produces a painful sore akin to a second degree burn. There is no treatment for EB, it's an incurable condition. Ian has to be wrapped in gauze from his neck to his feet everyday. He is the bravest little guy that I have ever met, I would do anything for him. Please visit www.ebinfoworld.com for more information about Ian's condition. Ian's home was in need of an addition to make Ian's life much easier for him and that's when Ephrata Area Rescue Services got involved and are now Ian's major support system. This little boy is a true firefighter at heart. He even has his own pager that he carries with him where ever he goes. Once his room is done it's going to be all decked out firefighter style!!! Ian loves emergency services and is an honorary member at Ephrata Rescue, Washington Boro, Willow Street. Please check out Ephrata's site at www.ephratarescue.com. This site has all the fundraising efforts, tons of pics and more about Ian.
Check out this video: EB Awareness video
