Imagine having a child whose skin is so sensitive that even the clothing they wear rubbing against their skin can cause abrasions so severe they may never heal. Imagine if hugging your child causes them to feel pain. Imagine a child unable to avoid constant cuts, wounds and abrasions both externally and internally, and you can begin to imagine life with EB.
My friend Wendy’s friend, Rafaella Lily, was born with a severe form of a rare genetic disorder called Epidermolysis Bullosa (EB). Often referred to as “The worst disease you’ve never heard of,” EB is a devastating disorder which causes children’s skin to be so fragile that simply scratching an itch results in blisters and tears. Kids with EB are known as Butterfly Children. Their skin is as delicate as a butterfly’s wings.
Knowing this, a group of moms from Rafi’s preschool got together to make a difference. They began Rafi’s Run two years ago to raise money to fund research for a cure for EB, and thanks to the amazing generosity of family, friends, and businesses, have collected $400,000 for the cause. Every penny donated to Rafi’s Run goes directly to researchers who are already making amazing discoveries that will benefit not only kids with EB, but a host of other children with similar disorders and beyond. Information about Rafi, EB and EB research can all be found on their website: www.rafisrun.com. (more…)
