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EB is one of those conditions that needs to be SEEN to be understood.

I wanted to be known for what I LOVED, not for what I hated.

I suppose in this life we need to recognize who cares about us and make sure to spend time with them.

Anyone that feels these kids aren’t heroes, I don’t know who their heroes are…

It goes without saying that if I had a dollar for every random treatment for EB people have tried to sell me I would be a very rich woman.

I am a happy person in the grand scheme of things, and I appreciate all the good. I just wish my lessons hadn’t had to be learned in such a hard way.

Love & Light,

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