Silvia's Kingdom

Blog

January 30, 2019

WWJD?

I was reminded recently of how lucky I am that my personal beliefs are rooted in direct personal experiences rather than bigotry, hatred, hearsay & ignorance. Through the storms of my life I kept an open mind and learned things and lessons so many are not privy of. That’s why...

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January 24, 2019

The Fight for my Son

I often post updates on the Facebook Page for my son (https://www.facebook.com/NickyLivingWithEB/) about his struggles and our fights, but the fight over his g-tube lately was one for the books. I have learned over the years that I get more bees with honey, but sometimes insurance companies and the rest...

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December 26, 2018

5 Things You Should Never Say To An EB Parent

Being the parent of a child with Epidermolysis Bullosa or any illness/condition is a perilous journey. The rarity of the condition makes it so we have to take any advice we receive from Doctors, Nurses and even other EB parents with a grain of salt. There are many forms of...

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December 18, 2018

Is that Time of the Year Again…

Is that time of the year again… the time filled with Christmas songs and glittery trees. It’s a time to be hopeful, to enjoy, to be more open and loving. I asked my mom the other day if she put the Christmas tree up yet… she said the time for...

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November 21, 2018

Blog Quotes

Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and...

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November 19, 2018

Our Life Does Not Fit in a Box

I remember vividly being pregnant with my first baby, Alex. Finally my dream of becoming a mom was coming true. I waited an elated 9 months for his arrival, and on the day after he was due we found out he had died in utero. He was stillborn 2 days...

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November 2, 2018

Life of an EB Mom

My son and I had two incredibly hectic days this week. We drove to Stanford one day for 6 hours, and the next day we were in the hospital all day where Nicky had surgery until 5pm, and then we took a 7 hour drive home-longer because of traffic. That...

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October 24, 2018

Epidermolysis Bullosa Awareness Week 2018

WHAT IS EPIDERMOLYSIS BULLOSA? Epidermolysis Bullosa is an umbrella term for inherited, genetic skin blistering conditions that vary greatly from mild to lethal. The three main forms are categorized under “simplex”, “junctional” and “dystrophic”. In recent years they also added a “kindler” form and an “autoimmune” form to the list....

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October 16, 2018

Speaking About Stillbirth Shouldn’t be a Taboo

October is Pregnancy and Infant Loss Awareness Month, yet stillbirth is still one of the last taboos. The Dictionary defines “stillbirth” as the birth of an infant that has died in the womb (strictly, after having survived through at least the first 28 weeks of pregnancy, earlier instances being regarded...

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October 10, 2018

Nicky’s Life Part 68

September 2014 We had quite an encounter with Orlando Bloom at the ROCK4EB Fundraiser in Malibu. We had a 10 minute chat.. He rubbed my shoulder and told me I was a brave woman. Mind Blown!! Then he took a photo with Nicky. A short video of the encounter here:...

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October 3, 2018

My Greatest Fear

“I no longer feel the need or want to keep living 😞😞 I don’t feel strong anymore…” That sentence, if ever uttered by Nicky, is my greatest fear. He has never said that, but he’s come close to it enough times to throw me in despair. It’s the type of...

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