Silvia Corradin Quotes

Thinking back, it was such a surreal day; when I wasn't sitting or crying I slowly paced the house like a zombie, waiting and weeping. I did not watch TV, read or listen to the radio. I was just 'there', thinking too much. Our old life, the one that included and was planned around the son we were fervently awaiting, was over. Our new life, the one where we had to learn to live without him, had not yet begun. We were in limbo. He was gone but he was with us. Was I still pregnant? I surely looked pregnant, but my baby was no longer alive inside of me, and I carried him inside of me not because of courage or dedication, but because I had to.

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.

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.

This entire ordeal taught me a valuable lesson. People are important-not things. I was no longer keeping up with the Joneses, material things or lots of money; that mattered very little to me. Life isn't about having, is about being.

Nicky's condition is called "Epidermolysis Bullosa", he has the Recessive Dystrophic form. This is a long fancy name for a condition of the skin where a certain protein called "collagen", which acts as a glue between the epidermis and the dermis, is missing or the body simply does not produce enough of it. Because the skin is missing this protein, blisters develop easily. This can occur after a slight bump of the skin or scratch, anywhere on his body, including his mouth and esophagus. Many of these blisters are painful, and will heal with scars. The scars cause deformities of the extremities, which lead to disability. Nicky always wears bandages to protect the healthy skin and allow healing of wounded skin. This condition is NOT contagious.

I was very upset at how his skin was peeling off so badly anywhere, but nobody gave it a second thought. They told me it was 'normal'.
Of course this was far from normal. There was no way they could have known about EB (Epidermolysis Bullosa) back then considering the rarity of the disorder. The only way to diagnose EB it is through a skin biopsy, and they would need to suspect EB to send it to the correct lab. It would not be until Nicky was born 21 months later that every Doctor imaginable was all of a sudden extremely interested in seeing photos of Alex. "Oh yeah" the dermatologist that diagnosed Nicky and Doctor McGuire at Stanford said to me unequivocally, "Alex for sure had EB." How EB could have caused his demise though is still a mystery. Doctor Marinkovich at Stanford told me that many babies with EB are indeed stillborn, but could not tell me why. At this point however, in the delivery room, we were completely oblivious about EB and would remain so for nearly two years

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.

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.

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.

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.

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.

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.

Come to think of it, I could not even think of a movie or TV shows where they had a baby die, with the sole exception of a couple of episodes of "Little House on the Prairie" and perhaps soaps. I was beginning to understand this was truly "the" unspeakable loss, "the" invisible loss, a loss so great nobody wanted to talk about it; a loss so inconceivable and so horrible that many people declared it as being the most overwhelmingly painful experience of their life; the death of which they were least prepared for. I was beginning to understand. My grief was colossal and all-encompassing. No loss is more difficult to accept and feels more unnatural and less understood