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Believe me when I tell you, never in a million years I could possibly exaggerate Nicky’s condition.
I became the parent who hopes against hope despite a horrible diagnosis, the parent who jumps out of bed the moment the child calls you even if you were in deep sleep, the parent that wants to believe in miracles.
As time went on, the difference between him and his peers only widened, and I started turning a blind eye to his peers. I could not compare, I wouldn’t. I refused to. I’ve even refused to compare him to other EB children, since the condition varies so greatly due to so many mutations causing the disorder.
There is the perception that because I don’t have a job or I’m not in school, that I’m sitting around doing nothing, which is ridiculous.
It’s my hope that by sharing my experiences I may be able to help others who have similar struggles and be their voice.
There are so many subtypes and subforms of EB that to bunch them all up in one neat little package or treat every patient equally is a great disservice to each and everyone of them.
Love & Light,
