January 26, 2022

Nicky’s Memorial Videos

I want to thank everyone for their love and support.  Since Nicky’s passing on December 5th I’ve been in a kind of a fog. It’s going to take sometime to re-gain some direction in my life as I feel lost and confused. I’ve been a full time caregiver for 25...

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April 29, 2021

Born Different

Nicky was filmed by Barcroft TV (Truly) for one of their videos about people born with different conditions and disorders. Here’s his! Nicky is not the first person with Epidermolysis Bullosa to be featured, here’s the other brave EBers that have been featured on this program. There are many others...

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February 28, 2021

Rare Disease Day 2021

Today is Rare Disease Day, a day dedicated to raising awareness about rare diseases and their impact on our lives.  There are 300 million people worldwide living with a rare disease, and approximately 25,000 people in the United States living with Epidermolysis Bullosa (EB). Nicky has the most severe form, called Generalized Severe Recessive Dystrophic form (RDEB-sev gen). He...

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February 21, 2021

Alex’s 26th Birthday in Heaven

The last week of February is coming up, and it’s always a somber time for me. 26 years ago I was 30 years old and nearly 9 months pregnant. I was so happy!! The crib was ready, the diapers bought, and I couldn’t wait to meet my little treasure. A...

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January 29, 2021

Sick and Tired of “Health Insurance”

This past fall, seeing how our Health Insurance Premium was going to be going up to nearly $1,000 a month (which is crazy), we shopped around for a similar plan but that could at least save us a little money in the long run. We compared, called, sent emails, you...

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December 17, 2020

My Son has Made me a Better Person

My son has made me a better person. No lie, I used to be the girl who slammed doors and threw things. It’s quite embarrassing to think about that now, but having a child with special needs has taught me to have an immense amount of patience. Nicky has taught...

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December 2, 2020

Just, PLEASE, Wear Your Mask!!!

A couple of weeks ago my family got devastating news. My sister, her husband, and our 88 year old aunt all got diagnosed with COVID-19. We do not know how any of them got it, we are thinking perhaps it was from my aunt’s dentist that was asymptomatic, but it...

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