That's Me

That's Me

Monday, May 26, 2014

Fly High, Butterfly

Disclaimer: The photos in this post are not mine and I am using them with the permission of the photos' owner. As with all photos on this blog, you may not reproduce or use these photos for your own use. 

 Let's talk about Epidermolysis Bullosa. EB for short. Never heard of it? That's okay. I hadn't either until I met my amazing friend & his amazing daughter.

First, let me introduce you to Butterfly C and Butterfly C's Dad.

Precious.

When Butterfly C's Dad had this beautiful baby girl, he devoted his entire life to her, just like any other loving, caring parent does. What he has had to do goes beyond what most parents dream of having to do when they begin their new life with a baby though.


Beautiful baby...
...to beautiful teenager.

That's because his daughter, Butterfly C, was born with what is called EB. Two initials that stand for a parent's nightmare and a child's life of unending pain. Two initials that don't at all tell you the suffering a person goes through. Two initials that seem innocent but stand for a horrifying, life-stealing illness.

EB is a rare genetic connective tissue disorder that affects approximately 1 out of every 20,000 live births. Those with EB have skin that is so fragile it tears and blisters from even the slightest little friction.

Butterfly C was born missing skin on her legs and feet. She was also missing some on her head from the forceps used during her delivery. Imagine holding your newborn only to find that their skin wasn't developed correctly and your touch was actually hurting this tiny little person who means the world to you. In that moment you are now required to become an expert in medical care and procedures for a medically fragile child.

The skin peeled off Butterfly C's ear.

EB is painful.

There is no cure for EB.

EBKids.org  says this on their What is EB pageTry to imagine a person with painful wounds similar to burns covering most of his or her body. Unlike burns these wounds never go away. For children, riding a bike, skating, or participating in sports is difficult because normal activities of children causes chronic sores. Wounds may cover up to 75 percent of the body. Imagine a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. Imagine a life tied to hospitals for wound treatment, blood transfusions, biopsies and surgeries. The eyes often blister preventing sight for days. Chronic anemia reduces energy and growth is retarded. There is little hope for life beyond 30 years. Children with EB are often referred to as Butterfly Children because their skin is as fragile as a butterfly's wings.
This describes the life of a child born with the severe forms of epidermolysis bullosa.

Butterfly C's hand, fused from EB, next to her
brother's hand also affected by EB. 
Covered in protective
bandages. 

Such a beautiful, generous, happy girl. Through daily pain, still thinking about others.

With the toys bought to brighten other
kids' holidays. 

The parents of children with EB spend several thousands of dollars a month on just bandages and dressings. A month. These are necessary to protect open areas from infection and from more trauma, and to provide a layer so the friction of clothing doesn't take off more skin. Insurance won't cover all, if any, of these items. These families have to pay out of pocket for things that are medically necessary for their child and often end up sacrificing in other areas to afford these necessities. That's on top of medical bills for frequent doctor's visits and hospital stays, for transfusions, for medication for frequent infections. That's on top of having to buy special, or pay to have altered, clothing, carseats, wheelchairs, etc. that won't pull off their skin. And let's not forget the lift-equipped van they have to buy if their child is in a wheelchair. 

On top of spending hours a day bandaging a child who is sick of it all and wants to go play a game that they aren't allowed to play, these parents spend all day watching out for and trying to prevent/avoid all dangerous situations. Like stopping a 10 month old baby from getting bloody knees from crawling on the floor. Or a 3 year old from scratching his arms open from scratching an itch. Or the 6 year old who wants to ride a bike with his friends but a helmet and knee pads aren't even close to the protection he needs. They also have to monitor their nutritional intake, avoid dehydration, and sometimes use a g-tube to feed their child. These children need around the clock care, requiring either an expensive home care nurse or a parent to stay home full-time, reducing income options.  

On top of the time and finances needed for your child...Imagine not being able to hug them tight because doing so would pull their skin off. Imagine seeing people staring at your child's scars and fused hands or hearing rude comments directed at and about your child. Imagine wrapping every inch of your child in Vaseline and several layers of gauze every single day, but never letting them play games like other kids because scrapes and bruises are major trauma. 

It is truly the worst disease you never heard of. And we need to get word out so that more people are aware. Most physicians don't know enough about it to even recognize it, much less how to care for a child with it.

Butterfly C's Dad is an amazing man who recently lost his daughter to complications from Epidermolysis Bullosa. He had to go through what no parent wants to go through: the death of his child. My heart has been broken for him, and like everyone else, I want to help but know there is nothing I can do to ease his pain. I realized that while I'm helpless to ease his pain, I can spread word about this illness. In honor of Butterfly C, a beautiful, smiling angel who is now pain-free and petting all the cats.


Now that you know about Epidermolysis Bullosa, I am asking you to do something about it.

You can go to this page on Facebook to help out a child with EB by buying something from their wish list--make the child smile and take a wee bit of the burden off the parents. You can go to this page for other ways to help people with EB. You can do a search and find EB charities and help someone that way. Make wishes come true or financial situations just a little bit easier. Or simply tell one other person about EB. You never know if the person you tell will be the one that tells the person that tells their child that grows up to find a cure for EB. 

5 comments:

  1. Thank you for sharing this information. I never heard of eb before but I am going to help spread the word about it.

    ReplyDelete
  2. Thank you, Addy & Friend.

    ReplyDelete
  3. This is so sad. No parent should lose a child to this illness. I hope there is a cure one day. I'm glad you wrote this.

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  4. Thank you, Anyonymous, and I agree that I hope there is a cure so that another parent doesn't suffer a tragic loss due to EB.

    ReplyDelete

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