11 Quotes by Silvia Corradin

I hate to say this, but I am still holding somewhat of a grudge at the people that could have come to the funeral but didn't, especially when they came up with some lame excuse how it was too sad or how they were afraid of cemeteries or whatever. No justification in the world could make up for you not being there when someone needs you. Period.

There was no cure for Recessive Dystrophic Epidermolysis Bullosa, there was also no known treatment, and no drug that improved the condition, not even an injection or medication to give him weekly or daily that would ease the symptoms. Absolutely nothing, zero, zilch.

The bottom line is that there are very few families who have a family member with a catastrophic medical condition such as RDEB that can survive financially without help.

For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, but I had been duped. The wounds were bigger, nastier, took longer to heal; the limbs were longer, we needed more bandages, longer wound care, hands worse, more homework, and things were only going to get tougher.

With Nicky’s form of EB, once an area gets over-wounded it never gets strong again. Some areas do not even heal ever again. These areas now included his feet. Even when they did heal, they were so incredibly fragile that even a simple step or a little pressure to get himself off the computer chair to the bed would cause a blister the size of my fist.

His itching caused ninety percent of his wounds; hence to us it was vital to overwrap to create that very important padding to prevent him from hurting himself.

The visit with Doctor McGuire confirmed our findings. There was no cure for Recessive Dystrophic Epidermolysis Bullosa, there was also no known treatment, and no drug that improved the condition, not even an injection or medication to give him weekly or daily that would ease the symptoms. Absolutely nothing, zero, zilch.

I accepted the child, but I did not accept this monster called Epidermolysis Bullosa, and I would move heaven and earth in order to effect change.

My role as an advocate for Epidermolysis Bullosa related issues, my key responsibility, were to inform, educate, and promote understanding of what we go through as individuals and as a community.