Epidermolysis Bullosa Awareness

My son Salim is 4.5 years old and absolutely amazing. He has Recessive Dystrophic Epidermolysis Bullosa, or EB for short. His body does not produce any collagen 7, which is the protein that binds our layers of skin together. The slightest amount of friction causes his skin to blister (equivalent to a 2nd or 3rd degree burn) or shear off completely. He is in bandages neck to toe 24/7 and his body is covered in open wounds. On top of that, EB ravages the inside of his body as well. He is 100% tube fed, blisters in his GI tract and major organs, and has to have regular surgeries to open his esophagus after scarring causes it to continually close. EB affects everything we do and every aspect of Salim’s life. He is in constant pain and must have his bandages changed and be bathed daily, which is a 2-3 hour process. We must lance and drain all blisters because nothing stops them from expanding. I adopted Salim from India as a single mom and he has been home about a year. He is the light and love of my life. Despite everything we endure with EB, he is thriving and so very joyful.
You can follow Salim’s story on Facebook - Loving a “Butterfly” - Salim’s Story #epidermolysisbullosa #epidermolysisbullosaawareness #ebsimplex #ebwarriors #ebawareness #butterflychild #butterflychildren #cureEB #ebwarrior