February 2, 2021
My Interview with Grey Genetics
A BIG *Thank You* to Grey Genetics for the Interview!!! Post Views: 1,837
rare disorder
May 30, 2020
July 18, 2019
March 21, 2019
What Having a Rare Condition Means…
What does having a “rare” member of the family means for our whole family? Rare means being scared. Nicky is 22 years old and I still check if he’s still breathing each and every morning. That magnitude of worry is overwhelming at times. I live his condition even though I...
February 26, 2018
I Love Someone Rare
Follow my blog with Bloglovin Rare Disease Day in February 28th this year! Nicky was featured on the Global Genes website back in 2014. As always, we are very open to share our story to gain awareness about Epidermolysis Bullosa. I can’t speak for other parents of kids with EB,...
December 20, 2017
It’s not Political Stuff, it’s Human Being Stuff
Nowadays, everytime I turn around, I hear something on the news on how the life of my child, once again, is an afterthought. The latest one is how the new tax plan passed unanimously by the GOP until the last minute didn’t have the ability to deduct medical expenses. Maybe,...
December 8, 2017
Standing Up For My Son
As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky, all I have to do is look at my healthy son, now...
February 28, 2017
Rare Disease Day 2017
Today is the international day of Rare Diseases – of course Epidermolysis Bullosa being one of them, it hits close to home. There are about 7,000 rare diseases, affecting 30 million Americans, 300 million people worldwide, but only 5% have treatments, and far fewer have cures. Rare diseases often go...
August 26, 2015
I Can Disagree
I know this is not a popular stance, or maybe it is, but if living with a child (he may be 18 now, but he’s still my child and will always be-and he will always live with me!) with a rare form of Epidermolysis Bullosa has taught me, is that...