Butterfly Child is the story of a mother’s journey through grief and incredible challenges. From the stillbirth at full term of her first baby, followed by a miscarriage, to the birth of her son Nicky, diagnosed with Recessive Dystrophic Epidermolysis Bullosa, a rare skin blistering disorder that requires extensive wound care and is considered life threatening. Challenges include Insurance Companies refusal to cover the most basic needs for any EB patient to Silvia’s trying to make sense of her situation, from a divorce to a remarriage and another scary pregnancy. Her youngest son, Connor, is 100% healthy and she never, ever, takes it for granted.
Mom to 3 boys, 2 in heaven, 1 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who had the Recessive Dystrophic form of Epidermolysis Bullosa. He passed away from complications of his condition in December 2021. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, eCommerce & Social Media Manager, webmaster, blogger and more.
I received a copy of the ebook in exchange for my honest opinion.
This book is full with so much love for her child. Silvia would move mountains for Nicky not to live in pain every day. Add in her own heart ache. Losing a child at term. Then, a miscarriage. Silvia finally had a child to love and to be the mother she always knew was in herself, but now she had to rethink how her future would be with a child with special needs. Most of us never heard of EB, Epidermolysis Bullosa, until we hear about someone with it or we see something on social media like Facebook. I learned about EB years ago when I joined a group that Silvia was in. I later learned about her son and I wanted to know more.
A favorite quote of my was "How well we (Silvia and Nick) were dealing with this", which was said to Silvia by a nurse. Well, how else were they to deal with this? When life throws you a curve ball, you move in a different direction. That is what they had to do. In order to keep Nicky healthy, they had to do everything in their power.
I can not believe the insurances issues that Silvia was having. I believe that the bandages are keeping Nicky healthy. Why can't an insurance company see that? I know why, but I can't say it. It is like denying needles or insulin for those with diabetes. I do have a couple stories about a friend with diabetes, but he always gets what he needs to treat diabetes.
I do believe when Silvia said that this experience made her more forgiving and understanding and a little kinder. I also believe that Silvia was meant to be a mother to a child with EB. Think about it. Back when Nicky was diagnosed, she could not find much information. Silvia created a website to educate others on EB. In the process, other EB families found her and she was no longer alone. Now this book. It will help some many families who get those words told to them about their child. You know the words I am thinking about. "Your child has Epidermolysis Bullosa" and most parents would probably be saying "What?" These parents would search the internet like Silvia did, but this time they would find good information.
Are you thinking should I read this book? My answer is yes! It is emotional, but it is a mother's journey of everything she has been through with a child with a rare fatal disease. Now, if you are a mother to a special needs child, then I think you will see yourself in Silvia here and there. I know I did. I am a mother to a special needs child. No, my daughter does not have EB, but her disease is rare. I will not get into this here, but another post about special needs children soon. It is also about a strong admirable woman, who learns her way to who she is today. Without all of these struggles, who would we all be?
My opinions of this book is my. It is hard to keep my reviewer half away from my special needs mom half. I am the same. I see so many things that Silvia wrote that I could have written. The isolation. The no help from family and friends. How Silvia grew up (I went to a Catholic School from Kindergarten to 8th grade). The one thing I know more than anything is mourning that perfect little baby you dreamed about. It took me awhile to get over my anger and to find the good in my life. Yes, I had a child with a rare disease, but she was so happy. It was hard not to see it in her.
☆☆☆☆☆ I give this book 5 out of 5 stars. Would I recommend this book? Yes! Author? Yes! Would I read more from this author? Yes!
Very poignant and heartbreaking account of a child's life with Epidermolysis Bullosa (EB). This family has been through much more than many of us could possibly endure or imagine. Yet they forge on and deal with each situation with bravery and courage, and constant searching for answers, for solutions, for help, for just the very means of survival with so many odds stacked against them. I thought it was very descriptive of the trials and tribulations they have been through as well as good and positive times they have enjoyed together. I recommend this book for a true understanding of the disease and what EB patients endure each day. My rating is simply for the editing and the typographical and grammatical errors that are in the book. I admire the author for writing a book in her second language and being so eloquent and honest in revealing her life, her thoughts, and her love for her children and her family!
Silvia Corradin is a compelling author while writing about her journey in life, especially as it relates to her son, Nicky, who suffers from a rare genetic disorder, Recessive Dystrophic Epidermolysis Bullosa, which is the most severe form of this disease. I love her raw and honest perspective and admire her strength and tenancity in terms of her constant research on EB and how she has experimented very well with different treatments for Nicky. Doctors cannot keep up with her. This book made me informed on EB; it made me cry; it made me smile; and Imjust wanted to put my arms around her and hug her. I highly recommend this book. You may even learn a lesson about yourself.
Definitely a must read!!! Such a well written book with great detail. It grabs hold of you from the first page & you just don’t want it to let you go. I have learned so much about EB with this read. But more importantly, I’ve learned not just what the person with the disease goes through, but also what the family members go through as well. There are times that you just want to give up, but you know that is not an option. Thank you for allowing me to travel this journey with you through your writing. It was emotional, but was also very inspiring. You are an amazing mother and Nicky’s story just leaves me wanting to know more and more about this rare disease.
I won this book on Goodreads. It was a very in depth account of a woman's journey with miscarriage, EBS , divorce, financial difficulties and her husband's stroke. It was beautifully written although it often repeated incidents and could have been pared down about 200 pages. The struggles she encountered through out her life show what a loving and strong woman she is. Her son, Nicky is someone to be very proud of also. It was at times heart rending and at times joyful. k
I read the introduction to the book and it touched my heart for the suffering that a mother endures with her child with epidermolysis bullosa disease and her ability to overcome all the difficulties she faced. I understand this suffering because I have two children with this disease and what we are suffering for them. It is a gift from God to us, so we must be patient in order to obtain a reward from the God.
Sylvia God love you I don't know how you were able to handle all the the heartache you had to deal with. I will be praying for Nicky and your family,and hoping for a cure so he can get some relief. I want to thank you for my copy of your book.