Butterfly Child Quotes

“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.”
― Silvia Corradin, Butterfly Child

“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.”
― Silvia Corradin, Butterfly Child

“We judge and it’s wrong. It’s just wrong. We know nothing about this person, nothing. What this trip to the Welfare office taught me is that.”
― Silvia Corradin, Butterfly Child

“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.”
― Silvia Corradin, Butterfly Child

“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.”
― Silvia Corradin, Butterfly Child

“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.”
― Silvia Corradin, Butterfly Child

“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.”
― Silvia Corradin, Butterfly Child

“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.”
― Silvia Corradin, Butterfly Child

“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.”
― Silvia Corradin, Butterfly Child

“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.”
― Silvia Corradin, Butterfly Child

“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.”
― Silvia Corradin, Butterfly Child