Butterfly Child: A Mother’s Journey

This is my book!!

butterfly_child_cover-5j_mButterfly Child: A Mothers Journey by Silvia Corradin 

“Children with EB are called “Butterfly Children” because EB is described as a skin condition in which the skin is so fragile, it is like butterfly wings.”

Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who was stillborn at full term. After a miscarriage she had Nicky, who was diagnosed at birth with the Recessive Dystrophic form of Epidermolysis Bullosa, an incurabile, rare and always-fatal skin disorder. EB is considered an Ultra-Orphan Disease, and at the time of Nicky’s birth there was no research for a cure. In the months and years that passed she had to learn to enjoy each moment, find happiness in the midst of sorrow and try everything she could to keep him alive, often with very few resources, little to no help and even less information available. Burying another child was just not going to happen if she could possibly prevent it.

Butterfly Child is the story of a mother’s journey through grief and incredible challenges. From 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.

WHERE TO BUY

Paperback:
To purchase an Autographed Copy, please follow the Instructions Here–>

The paperback is also available through the publisher:
http://www.lulu.com/…/butte…/paperback/product-22092004.html
I wanted to keep the price low but this is a big thick book and it’s not cheap to print. I am sorry.
To make it up to you, here’s some coupon codes websites:
http://www.retailmenot.com/view/lulu.com &
https://www.couponcabin.com/coupons/lulu/

Amazon:
http://www.amazon.com/Butterfly-Child-Silvia-Corradin/dp/1312979208/

Barnes & Noble
http://www.barnesandnoble.com/w/butterfly-child-silvia-corradin/1121706067

eBook versions:
From the Publisher:
http://www.lulu.com/…/butterfly…/ebook/product-22097219.html

iTunes:
https://itunes.apple.com/us/book/butterfly-child/id979932054?mt=11

Kindle:
http://www.amazon.com/Butterfly-Child-Silvia-Corradin-ebook/dp/B00VS3F7CE/

Nook:
http://www.barnesandnoble.com/w/butterfly-child-silvia-corradin/1121706067

Kobo:
https://store.kobobooks.com/en-US/ebook/butterfly-child

Please LIKE the Facebook page (below) to be notified of new articles or book sales and promotions.

THANK YOU!!!

Mom to 3 boys, 1 in heaven, 2 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 has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

Facebook Twitter Google+ Flickr YouTube 

Please Watch!

Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview.

Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11

Everyone Belongs

For more information or to Order the book, simply click on the title.

ResizeImageHandler

Everyone Belongs by Dennis Vanasse M. ED.

Meet Ryan. He is just like you and me, except that he suffers from a rare skin disorder called EB. Because of this disorder, Ryan experiences painful blisters, his skin peels off, and infections occur on a daily basis. Rather than feeling sorry for himself, Ryan’s goal is to make others aware that people with EB are just like you and me. Ryan loves talking on the phone, playing with friends who give him a chance, painting, singing, writing stories and playing chess. Despite his fragile skin, Ryan is truly a strong and spirited gift to the world, as he shares his inspirational story.

Dennis Vanasse was born in Mystic, CT and is the second oldest of eight children. He graduated from Anna Maria College in 1994 with a Bachelor of Arts in Elementary Education and received his Masters of Education in Special Education from Fitchburg State University in 1997. He is currently the Director of the Student Success Center and an Adjunct Professor at Anna Maria College. In addition, Dennis is a special education department head at Sough High Community School in Worcester, MA. Dennis is also the author of “I Am Special Too” and Stand Tall against Bullying. He lives in Worcester with his wife, Kerrie, and his four children: Sarah 14, Katie 13, Matthew 11, and Tommy 8. Dennis’ passion is working with special needs children.

Courage Under Wraps

MFor the past year my new friend and fabulous photographer Jodi Champagne, has been documenting my son’s life as it is.

My son’s name is Nicholas Zahorcak, we call him ‘Nicky’. He was diagnosed shortly after birth with the Recessive Dystrophic form of Epidermolysis Bullosa.
Jodi photographed us doing bandage changes, during trips to the various Doctors, from the Dentist of Asecra dentists to Hydrotherapy, came with us Trick or Treating and to visit Santa & the Easter Bunny. She witnessed pain, suffering and sibling rivalry.

Courage Under Wraps” is now a reality, the reality of life with RDEB, from the moment Nicky wakes up in the morning to the moment he goes to bed at night, aimed at raising EB Awareness. At this point it’s available in print, as a PDF download and as an ebook for the iPad. Jodi is working on getting it available in other ebook formats, such as the Kindle & the Nook. Part of the proceedings are donated to the EBMRF for a cure.

Here’s just 3 of the hundreds of photos that are in the book…

Nicky at his computer, photo courtesy of Jodi Champagne, from the book 'Courage Under Wraps'

Nicky (and mom) during a bandage change, doing some physical therapy on his hand. From the book 'Courage Under Wraps'

Nicky (and mom) during a bandage change, doing some physical therapy on his hand.
From the book ‘Courage Under Wraps

Nicky during Hydrotherapy. From the book 'Courage Under Wrap'

Nicky during Hydrotherapy. From the book ‘Courage Under Wraps

There is a Facebook page for this book as well which has gotten a great amount of interest, many photos that did not make the book (and some that did!) have been posted, LIKE it today!

Thank you so much for caring and please help us spread the word about this brutal condition and help us getting closer to a cure.

Blessings,

Silvia

Mom to 3 boys, 1 in heaven, 2 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 has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

Facebook Twitter Google+ Flickr YouTube 

How to Help Bereaved Parents

I wanted to take a moment and wish everyone HAPPY HOLIDAYS, and as a good catholic, MERRY CHRISTMAS! BUON NATALE of, course to my Italian family and friends.

I’ve been a bit MIA on this blog, my apologies. I’ve been busy finishing up my book about the story of my precious son I lost due to a stillbirth. I I wrote Alex’s story as the beginning of the book I am writing about my son Nicholas, who is 16 years old as I write this and has RDEB. I feel this story stands alone and might be helpful to other parents facing similar circumstances.

Following that thought of helping others in similar circumstances, here’s the list I have on the back of the book on How to Help Bereaved Parents. My book, Losing Alex, is available now for the Kindle and it’s only $2.99.

 How to Help Bereaved Parents

If you ever have a friend or a relative lose a child, please remember the following:

1. Send a card or/and flowers. Truly, it’s the least you can do. I would even go as far as saying to send a gift of some sort, an angel, a book, a Christmas ornament, just put your thinking cap on. Do it.

2. Don’t expect them to ‘get over it’. The loss of a child, whether an adult child or an infant, is not something you ‘get over’. It is something you learn to live with.

3. Don’t ask what you can do for them, or tell them to call you. They won’t. Pick up the phone and call, or pick a thing to do for them and do it. Bring dinner, mow the lawn, make a contribution to the funeral or medical bills, help clean the house, run errands for them, anything, really.

4. Listen – The best gift you can give a grieving parent is your listening ear. Let them express their feelings – the questions, the disbelief, the anger, the pain and even the guilt they may be experiencing.

5. Don’t avoid them like the plague. You cannot ‘catch’ their bad luck. Invite them to lunch, take them to the movies, go to the mall with them, let them talk and cry. They NEED you.

6. Go to the funeral. You have no idea how important that is. It does not matter what you have to cancel or if you have to take part of the day off from work. It’s two hours of your day they will forever be grateful to you for.

7. Recognize that grieving has no time limit and varies from individual to individual both in the way they express their grief and the time required to stabilize.

8. Respect their grief. Treat the parents and give them the same sympathy that you would show for the death of an older child.

Mom to 3 boys, 1 in heaven, 2 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 has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

Facebook Twitter Google+ Flickr YouTube 

New Low Price for Kindle versions!

Hello everyone,

just a quick notice!

The Kindle editions of BOTH Living with Epidermolysis Bullosa and Special Mommy Chronicles are now available for the NEW low price of $2.99! Click the covers below to be taken to their respective page at amazon.com
    

If you don’t have a kindle, the APPS are FREE for all platforms, including PC & MACs! Get it HERE!!

Thank you SO MUCH!!

Mom to 3 boys, 1 in heaven, 2 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 has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

Facebook Twitter Google+ Flickr YouTube 

E.B. Some Call It Epidermolysis Bullosa, I Call It Extraordinarily Beautiful

Being born and living with E.B. is one heck of ride, never a dull moment. My inspiration for this book was my family, no matter what I’ve been through or what I’ve wanted to do in life, they have always been there for me. I am a young independent woman because my parents allowed me to find my own limitations. If i wanted to learn how to do something they would help me figure out how I could do it, some things took a little more creativity than others, but they never told me “no you can’t do that”.

Due to my E.B. my hands look like fists which makes it challenging to do certain tasks, but I love a good challenge. One of my passions is cooking, you should see me chop with my favorite 10″ chefs knife…lol. I do get blisters on some spots on my body and my skin is fragile which means I have to watch the physical activity I do, but I always try to find a way to do all the fun things in life. Like mini jeeping through the cliffs and on the beach in Cabo, (that was AWESOME!!) or riding the rollercoasters at Disneyland (my fav place).

I know I have E.B. and I need to be careful, but I am also a girl who loves living life and is going to make the best of it. So much more has happened in my life, a lot of good times and some dark times, but I would’nt trade my experiences for anything, they have made me who I am today.

I shared my story because it’s not just my story, it’s the story of every kid with E.B. We may have E.B., but E.B. doesnt have us. We are strong, confident and beautiful!! Experience life! Open that front door, take a step and enjoy the road trip of life.

E.B. Some Call It Epidermalysis Bullosa, I Call It Extraordinarily Beautiful by Derra Nicole Sabo

Book Description
I am E.B….meaning that I was born with Epidermolysis Bullosa, the most beautiful and daunting game I have ever played. I am the overcast kid who lives life on the outside looking in. E.B. has made me a strong, eyes wide open to the world, grounded girl. With everything that I have been through, there’s one thing that I do at least once a day…laugh! It really is the best medicine, I mean come on, its not like I’ll make it out alive anyway…lol

Derra Nicole Sabo

My name is Derra Nicole Sabo, Im a daughter, the oldest of three kids, and a friend. Im smart, love to cook, rock out to music, dance, draw, write, read a good book, go shopping, catch a movie and travel. My favorite season is winter, my favorite place is the beach. Oh yeah, and i have E.B.! To quote a line from my all time favorite movie, “Lifes no fun without a good scare”…

Facebook Twitter 

Kidowed

Kidowed is an e-book available on Amazon.com about a mother who had two children afflicted with the fatal Junctional-Herlitz subtype of Epidermolysis Bullosa. Her story is one of tragedy and loss, but also hope, victories, and humor. The book was originally written as a journal, and has remained in that format. The author, Jessica Kenley, is extremely candid about her thoughts and experiences at the time she was writing the book.

Jessica Kenley was born in Buffalo, New York and now lives in Coudersport, Pennsylvania. She is a licensed veterinary technician and has one surviving child from a marriage subsequent to her first two children’s father. Her remaining child is EB-free and at the time of publication is 2 magnificent years old.

Kidowed, by Jessica Kenley

Book Description
In this book you’ll find the the struggles, sorrows, and triumphs of the author after she has two children with a rare and universally fatal genetic disease. As she travels through her hellish journey, you will experience unexpected humor, endless love, and learn how strong one family can be while they walk beside her.

LIKE Kidowed’s Page on FACEBOOK!

Don’t worry! If you don’t have a Kindle, you can still download Kidowed using Amazon’s free reader apps!
http://www.amazon.com/gp/feature.html/ref=sv_kstore_1/187-4416743-3286369?ie=UTF8&docId=1000493771

Jessica Kenley was born in Buffalo, New York and now lives in Coudersport, Pennsylvania. She is a licensed veterinary technician and has one surviving child from a marriage subsequent to her first two children’s father. Her remaining child is EB-free and at the time of publication is 2 magnificent years old.

Facebook 

Don’t Tell Me That You Understand…

By Silvia Corradin

From: Special Mommy Chronicles  (Unpublished Column from November 7, 2006)

“Don’t tell me that you understand, Don’t tell me that you know, Don’t tell me that I will survive, How I will surely grow. Don’t tell me this is just a test, That I am truly blessed, That I am chosen for this task,  Apart from all the rest…”
These are just the first two paragraphs of a poem I ran across while collecting a few for a dear friend of mine who recently lost her son to the same condition that my child has. Having lost a child myself, I have surely read many helpful poems, but this one somehow got stuck in my head because it not only helps bereavement moms deal with their loss, but it spoke to me on how hard it is to deal with the general public when parenting a child with a disability.

How many times friends and relatives, even friends and relatives of other moms or patients, think they ‘know’ what we go through? Unfortunately it goes farther than that. These sometimes well meaning individuals judge us for decisions we make, things we do or things we say out of despair or loneliness! I’ve seen it happen often in these past 10 years. People that have no clue of what a special need child’s mom’s day is like is not in any position to judge the treatments we choose for our children, the decisions we make for their well being and certainly cannot understand what it means to be so angry that it seems to us as if nobody cares that we vent at anyone that will listen. Just yesterday I was very upset at the new company that provides my son’s supplies because after a week and 3 messages left to call me back, nobody could be bothered to call me back so I could place my order! Finally I picked up the phone and made one more phone call only to get their answering service again, so I left quite the crude message.
Needless to say, the person that does not understand how badly my son needs these bandages, someone who never had to watch their child in pain day after day for ten years, or have to sit there hearing their cries of pain, could not even remotely comprehend my rage and surely would be prone to judge me because of it.

To those compelled to judge a parent about a situation they know nothing about I only have one thing to say: Exchange places with me, for one day. Just one day. For one day you will have to change my son’s bandages, see my son’s wounds, hearing him cry in pain, change his diaper, prepare his tube, give him his medicine and take care of everyone of his needs. He cannot dress himself, nor get a drink from the refrigerator for himself. His needs are many and constant.

Why would this help? Because, you see, it’s not pity, nor “poor” this and that which moms of special need children want. What they want is to be understood, to be given some slack when they have a bad day, and foremost, not to be judged. It’s only when someone walks in someone’s shoes that the light bulb turns on. Anyone willing to exchange places with me?

The Bible says it best: Luke 6:37 “Do not judge, and you will not be judged; and do not condemn, and you will not be condemned; pardon, and you will be pardoned.”

Mom to 3 boys, 1 in heaven, 2 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 has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

Facebook Twitter Google+ Flickr YouTube 

Books About Epidermolysis Bullosa

The Official Patient’s Sourcebook on Epidermolysis Bullosa: A Revised and Updated Directory for the Internet Age
This book has been created for patients who
have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to Epidermolysis Bullosa, from the essentials to the most advanced areas of research. Given patients’ increasing
sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. In addition to extensive references accessible via the Internet, chapters include glossaries of
technical or uncommon terms. This is a “must have” reference book
for patients, parents, caregivers, and libraries with medical collections.

~~~~~~~~~~~~~~

Epidermolysis Bullosa – A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet
by Icon Health Publications 

This is a 3-in-1 reference book. It gives a complete medical dictionary
covering hundreds of terms and expressions relating to Epidermolysis Bullosa. It also gives extensive lists of
bibliographic citations. Finally, it provides information to users
on how to update their knowledge using various Internet resources.
The book is designed for physicians, medical students preparing
for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to Epidermolysis
Bullosa.
If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages.

~~~~~~~~~~~~~~

Tough Cookie
by Lillian Sparks

This biographical book tells the story of Byron Todd Sparks, a.k.a. “Tough Cookie,” and his family’s journey of faith amidst Recessive Dystrophic Epidermolysis Bullosa, a painful, incurable skin disorder.
>Purchase this Book New at Gospel Publishing

($9.99)

>Purchase this Book Used at Amazon (around $3.00 on average)

>Purchase this Book at Half.com and in the search engine type
LillianvSparks (usually around $2.00-2.50 on average)

>Please note: the cover art may be different on earlier editions of this book.

~~~~~~~~~~~~~~

>Parents Cry Too
by Lillian Sparks

A follow-up to Tough Cookie, this biographical book details how the “Tough Cookie” miracle touched the hearts of thousands of people, encouraging their faith in God.

>Purchase this Book New at Gospel Publishing
($9.99)

>Purchase this Book Used at Amazon (around $7.00 on average)

>Purchase this Book at Half.com and in the search engine type
Lillian Sparks (usually around $2.00-2.50 on average)

>Please note: the cover art may be different on earlier editions of this book.

~~~~~~~~~~~~~~


Living with Epidermolysis Bullosa (Paperback)

Compiled by Silvia Corradin, edited by Brenda G.

Living with Epidermolysis Bullosa has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how it is like to truly live with every form of Epidermolysis Bullosa; from the milder Simplex variants, who are nonetheless not simple to live with, to the more lethal, namely Junctional, whose patients usually succumb to before their first birthday. The stories you will read are from proud parents, or patients and their struggles and how they are coping. Some stories are sad, some are encouraging, and everything in between.

~~~~~~~~~~~~~~

Thick Skinned
by Dan Cogliano

About the Author
Dan Cogliano was born with a condition (yes, Epidermolysis Bullosa) that in some people makes even the touch of another human or drink from a glass of water a potential cause for medical treatment. But Dan’s perseverance in the face of this malady paid off big time.
First, as an actor, he appeared on the daytime soap opera “Another World” and in over two dozen off-Broadway classical repertory productions. Then he went on to the job of vice president in the international marketing division of “Merrill Lynch.” And along the way he became a husband, father, and athlete.

Book Description
Here is a personal story of how we are shaped by the life we are dealt
and how by rising to those challenges we forge our own lives. This
is a story of getting through the pain, the tough times, and the
seemingly impossible. Above all, it is story of what it means to
be human.

~~~~~~~~~~~~~~

Special Mommy Chronicles
(Paperback)

by Silvia Corradin

The Special Mommy Chronicles is a series of columns written by Silvia C., the mom of a Special Need
child (son suffers from the Recessive
Dystrophic form of Epidermolysis Bullosa
) which offers
insights, stories and struggles that go along in raising special kids.

Book may be purchased directly from the publisher by following THIS LINK.

It’s also available at Amazon.com and Barnes& Noble Booksellers.

~~~~~~~~~~~~~~

Epidermolysis Bullosa : Basic and Clinical
Aspects

by Andrew N. Lin, D. Martin Carter
(Editor)

The clinical management of the rare skin disease known as Epidermolysis Bullosa (EB) poses a problem for those dermatologists who have never seen the disease
before. All the information needed to treat patients with EB is now accessible in this practical guide written by recognized experts for the practicing physician. In a systematic and thorough fashion, the editors present the basic science necessary to understand the pathogenesis of the disease, as well as system by
system coverage of the extracutaneous manifestations. This is the
first volume ever to present clearly all aspects of Epidermolysis
Bullosa in a form appropriate for use in daily clinical management

~~~~~~~~~~~~~~

Epidermolysis Bullosa : Clinical,
Epidemiologic, and Laboratory Advances, and the Findings of the
National Epidermolysis Bullosa Registry

by Jo-David Fine
(Editor), Eugene A., MD Bauer (Editor), Joseph, MD McGuire, Eugene
E. Bauer (Editor), Alan Moshell (Editor)

The first full report of the Registry, which
was established in September 1986 to track the protean family of
mostly inherited skin diseases. Scientists involved with the
project provide a definition and historical overview and explore
such aspects as the epidemiology in the US, Canadian, and European
study populations; cutaneous and skin-associated musculoskeletal
manifestations; the risk of selected major extracutaneous
outcomes; premature death; altered nutrition; oral manifestations;
the molecular biology; non-molecular approaches to treatment; and
the rare acquired form. — Copyright © 1999 Book News, Inc.,
Portland, OR All rights reserved Book News, Inc.®, Portland,
OR

~~~~~~~~~~~~~~

 Jonny Kennedy (Paperback)
The Story
of the Boy Whose Skin Fell Off
by Roger Stutter (Author), Nell McAndrew (Foreword)

Jonny Kennedy was the star of the
unforgettable Emmy award-winning documentary The Boy Whose Skin Fell Off. He was an extraordinary character determined to live an ordinary life despite being born with the agonising condition Recessive Dystrophic Epidermolysis Bullosa (EB), which meant that his skin could literally fall off at the slightest touch. It was a
daily struggle he faced with courage, determination and wit, offering inspiration to millions around the world. Tragically, Jonny was just 36 when he lost a final battle to skin cancer. This is his moving, honest and uplifting story. ‘I feel very fortunate to have met such a special person and I will never forget him.’ –
Nell McAndrew

About the Author
Roger Stutter was one of Jonny Kennedy’s closest friends, and spent many months recording Jonny’s innermost thoughts and recollections for this extraordinary memoir.
Additional memories are provided by Edna Kennedy, Jonny’s mum, and
Nell McAndrew, who befriended Jonny in the final months before his
death. It is hoped the book will raise awareness for Jonny’s
condition and for the charities that continue his work.

~~~~~~~~~~~~~~

Know of another book specifically about EB not listed here? Message me on our Facebook Page and let us know!