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Silvias Kingdom

Silvias Kingdom Blog Details

Silvias Kingdom
I'm Blogging From: United States
Member Since: May 2014
Ranked: #12 in Special Needs Blogs #270 overall

Silvias Kingdom

Subtitled My Life with my Butterfly is my blog about my life with my special need child, born with Recessive Dystrophic Epidermolysis Bullosa. My first baby was stillborn, followed by a miscarriage, Nicky was my third pregnancy. He lives in pain every day. I was also lucky to have a healthy child after him, and I never, ever, take him for granted.

Recent News

  • 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 comment got a lot of likes and it got me very, VERY, VERY upset. I was irate. I could not sleep for days. That same week another EB mom had to defend herself from similar commentaries. On her blog she stated that her child could breathe and eat on his own, it’s not like he was on life support. What was she supposed to do? Starve him to death? Not change his bandages and hope for an infection to take him or…Read More
    Saturday 21st of October 2017 11:03:30 AM
  • 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 wanted him to win, so I would sit in 2nd place and throw turtles at anyone that passed me. Before long Nicky got so good he not only didn’t need my help, but when I tried to win, I hardly ever could!! Nicky’s love affair with Mario and the gang continues till today. 3.5 years ago with the help of a variety of wonderful souls I was able to redo hisRead More
    Friday 13th of October 2017 09:47:51 AM
  • 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 questions. In fact, we encourage it. You can either ask it in the comments below this post or you can come on over to his FACEBOOK PAGE and either post your question or send a message to the page. Here’s a description of Epidermolysis Bullosa taken from my book Butterfly Child: “Nicky’s condition is called “Epidermolysis Bullosa”, he has the Recessive Dystrophic form. This is a long fancyRead More
    Wednesday 11th of October 2017 11:52:00 AM
  • 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 contacted by Barcroft TV Productions last fall after Kate, a producer, came across my book “Butterfly Child” where I wrote about Nicky’s life with Epidermolysis Bullosa. She wanted to know if Nicky might be interested in telling his story for this show. Nicky is always VERY open for awareness, he wants a cure, and he’s not, and never has been modest about taking photos of his wounds etcetera. I know many patientsRead More
    Friday 6th of October 2017 10:41:50 AM

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Quick Infooo Unique PVs Total PVs
Days sincs last vote:30
Total unique in: 10 Out: 245
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0 0

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