I am the mother of 3 boys, 2 in heaven, 1 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He died in late 2021. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more. I hope my life and my struggles through grief and special need parenting inspire you to enjoy each moment.
My heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn't be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.
Thank you Marsha! Click Below to see it or purchase it! Prices for the book start at only $2.99!
My biggest challenge to overcome is still acceptance on some days. Not every day, mind you, just some days.
I fight to have hope every day with every fiber of my being.
It is exhausting being afraid for your health care every single day. Continuously, the message received is disabled lives do not deserve to exist.
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.
There are thousands of genetic disorders out there, and even IF Nicky’s dad and I had done genetic testing prior to conceiving, they would have NEVER checked for EB. It’s just too rare.
Nicky’s body makes no collagen whatsoever, so no cream or anything else I could give him to “boost” his collagen production would work because his body does not know hot to make it at all.