May 30, 2020
rare disease
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...
September 25, 2018
Blog Quotes
When my son was born there were no research trials, no further treatment of any kind. No pills, medications or hopes to be had. No one can prepare you for having a rare child. It’s a lonely place to be. I am a special needs parent. I got this. When...
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,...