Sunday, June 14, 2015

Thursday's Thought: Butterfly Child

I wanted to get this out as soon as I finished it, but forgot to post it this past Thursday.  My daughter just finished school that day and I forgot.

I wanted to talk a little bit about a book that I think needs to be highlighted.   The book I am talking about is called Butterfly Child by Silvia Corradin.  

It is about Silvia's son, Nicky, who has Recessive Dystrophic Epidermolysis Bullosa, which is "a rare skin blistering disorder that requires extensive wound care and is considered life threatening" (from Goodreads description).  

Here is a photo of Nicky with the Butterfly Child book.

I firmly believe that we need to learn as much as we can when it comes to rare diseases such as EB.  There is so much out there on diseases like Diabetes, Heart Disease, Breast Cancer, but these rare diseases are not that well known.  I know I did not hear about EB until many years ago when I met Silvia in group we were both in. When I learned about her son, I knew I had to know more.  My daughter was diagnosed with a rare disease, too.  I may not understand everything that Silvia was going through, but I understand a lot.

Here is Nicky when he was 2 1/2 years old.  Think about you being a parenting a child with a rare disease.  How would you feel if he or she lives in pain every day?  You would do everything there is and more.  That has been Silvia's mission in life.  To get information about EB out there, to help find a cure for her son.  About this time in Nicky's life Silvia began taking photos of Nicky's blisters.  She did this as a way to explain how awful this disease it.  Silvia had people compare these blisters to severe eczema.  I believe there is nothing worse that these blisters.  Think about a time where you had 4 or more minor blisters on your foot.  Then, think what it would be like it 2 of those minor blisters were like Nicky's.  How would you handle that?  Now think of you being a child.  A child who lives in pain every day.  

Nicky is almost 8 years old here.

We need to stop judging those around us.  Everyone goes through a struggle sometime in their life, but maybe that struggle did not last long.  Think of Nicky, who lives every day with this.  Please be kind to kids like Nicky or any kids with a special needs.

To learn more about Nicky, Silvia and her wonderful book, Butterfly Child: A Mother's Journey, please click: HERE for her website.

Happy Reading!

All of these photos are being posted with the permission of the owner, Silvia Corradin.

No comments: