Blog Quotes

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.