DAILY LIVING & MOBILITY

Living With A Rare Disease: Congenital Nevus

Rare Disease & Syndrome

Ruthi Gaon

Congenital Nevus Is Not Contagious And It's Rare

I swear I got used to people staring at you, the comments behind our backs, the sad fact is that no matter how much we talk about inclusion and acceptance, the one who is different remains excluded and will always draw attention. Sometimes it is even amusing. But it is hard for me when people are just mean. How can someone laugh about you, my beloved son? Erezi, the easiest thing was to burst on that mother, laughing at her young daughter's insulting remarks about your unique look (things I can't even put in writing). I swear that at that moment I felt as if I would squash her face (and much more). But you just smiled, took my hand, and just kept on walking.

A magical touch you have my child, it's a fact that instead of me wanting to strangle her, I have decided to show everyone that I am so proud of you and your many dots. Especially that dot which is really close to your beautiful eye that manages to see all the goodness in this world and disregard all other. To sum up... it is important to me that people all over the world will know that there is a name for it. it is called Congenital Nevus and satellites sometimes it comes with NCM. It is not contagious, and it is rare. There are brave children and adults who are challenged by this rare disease all over the world. 

And to you dear mother, if this post reaches you just know that I choose to forgive you, not only because it is the days of forgiveness of Rosh Hashana but because of my treasure that teaches me everyday how to be a better person. I wish I were you!

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