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Many of us go through life not knowing what it is like to have a child with a disability, impairment or disease. We donít know what itís like to never see your child experience what normal children do and, worse yet, not know how long your child will live.
We have had the privilege of being involved with a family whose daughter, Samantha, suffers from Epidermolysis Bullosa, or EB. We have come to learn and feel their pain. I will call it a blessing that God gave to us, because we realize that what happens outwardly in our lives is not as important as what happens inside us.
We have witnessed the pain and suffering Samantha goes through firsthand. EB, with its pain and suffering, bandaging, blisters, and open wounds, is not pretty. Samantha is, however, very beautiful, and her heart is as big as her body.
Lou and I support this organization, EBAN. I am asking you to support this organization because it is our God-given purpose to reach out and help each other. The families that suffer from this horrible disease need our support, and our help, and most importantly, our love.
Anita and Lou Piniella