It’s OK to Ask Me or Nicky

I was reading the comments left underneath the video of Nicky and I noticed a lot of people are asking the same questions over and over again. But… just not to me, to the “wind”, so to speak.

So, I want everyone to know it’s ok to ask me or Nicky questions. In fact, we encourage it. You can either ask it in the comments below this post or you can come on over to his FACEBOOK PAGE and either post your question or send a message to the page.

Here’s a description of Epidermolysis Bullosa taken from my book 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.”

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.

Also… just to be thorough, Nicky 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 how to make it at all.

One of the questions that seems to pop up a lot is how “different” he seems and he looks from a regular 20 year old. That is very true, Nicky is nothing, NOTHING like a regular 20 year old. Nicky has experienced difficulties his whole life that most other children (and adults) have not. His body constant battle to heal wounds has stunted his growth. In fact, he deserves recognition for his bravery and his love for life despite it all. Nicky LOVES to be alive. He HATES EB with a passion, make no mistake, but to those that suggested euthanasia… well… you have no idea what you’re talking about, and that’s why it does not bother me at all.

I realize most people experience daily life without needing to see sick children regularly. This is why we need awareness. Most people can ignore the fact there are children sick or dying until they watch the news. I cannot. That, unfortunately, is not my world. Sick children are all around me. They are at the doctors’ offices where we spend a great deal of our time. They are across the hall in the hospital when we are there for treatments, surgeries, and appointments. They are in in waiting rooms and in the line at the pharmacy. Even by abandoning my ties to support groups, I will still encounter sick children and loss.

Nicky, as for most with rare conditions, is fully aware he’s different and instead of pretending he’s not, he’d rather own it and still be made to feel like he fits in regardless. So, please ask away. And to those who left kind words… THANK YOU!

Love & Light,

 

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