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Silvia's Kingdom · 1d ago

The Hard Work of Being Hopeful

Society as a whole is filled with nice people. I met a ton of these kind people, whose heart is filled with kindness and generosity. But I don’t live in a bubble. I know some people are crue...
Silvia's Kingdom · 6d ago

Nicky’s Life Part 58

January 2008 – Nicky showing his flexibility! This is one of the few things he can do with...
Silvia's Kingdom · 1W ago

Help Nicky raise EB Awareness!

Nicky was born on November 25th, 1996 and was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). EB is a rare genetic skin disorder, his body does not produce a vital protein ...
Silvia's Kingdom · 1W ago

Gene Therapy for Epidermolysis Bullosa

This was an important week for Epidermolysis Bullosa Awareness. An article about a boy in ...
Silvia's Kingdom · 3W ago

Blog Quotes

Life hands us raw deals, and we can either laugh or cry, and while I am not sitting here telling you I’ve never cried, nowadays I try my best to enjoy life, enjoy the little things, enjoy th...
Silvia's Kingdom · 1M ago

We need MORE EB Awareness!!!

Several years ago I happened upon a reply to a post about a child with severe RDEB in a special need parenting forum and one of the commenters stated that they should just “kill him”. That c...
Silvia's Kingdom · 1M ago

Nicky’s Life Part 57

March 2014 – When Nicky was 4 years old I decided that perhaps playing video games would be beneficial to him and something he could do without getting hurt. I bought a used Super Nintendo and we started playing Mario Kart every day. He loved it. I w...
Silvia's Kingdom · 1M ago

It’s OK to Ask Me or Nicky

I was reading the comments left underneath the video of Nicky and I noticed a lot of people are asking the same questions over and over again. But… just not to me, to the “wind”, so to speak. So, I want everyone to know it’s ok to ask me or Nicky que...
Silvia's Kingdom · 1M ago

Nicky featured on TV show “Body Bizarre”

It was a cold, rainy, foggy day when we left San Francisco this past February at the end of the shoot for Nicky’s documentary. We arrived home just before midnight, exhausted but happy. Nicky then slept for over 12 hours, as he often does. I was cont...
Silvia's Kingdom · 1M ago

Blog Quotes

Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoir...