“Fun Cards” that Nail what it’s like to be an EB Parent

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Nicky had so much fun yesterday making croissants

Nicky’s being 🎥 filmed for Born Different #bo

We can always use more kindness in our lives, but

On the heels of Rare Disease Day I wanted to sprea

I tell my story so other moms feel less alone. Whe

Happy birthday 🎈 🎂 in Heaven baby Alex ♥️ A mamma never forgets. Miss you forever and always 👼🏻#stillborn #stillbirth #stillbornstillloved #stillbirthawareness #stillbeautiful #stillbornawareness #bereavedmother #grief #loveyouforever #heavenlybirthday #babyloss #babylossawareness #lossanniversary #birthdayinheaven #amomneverforgets #iwillalwaysloveyou #iwillalwaysmissyou #infantloss #angelbaby #angelmama

Today is rare disease day... and Nicky & I want to

Hey friends, just a little update on our fight wit

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Hi!

I'm Silvia.

I am the mother of 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more. I hope my life and my struggles through grief and special need parenting inspire you to enjoy each moment.Read more...

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