Epidermolysis Bullosa and Christer & Jeffrey

"By definition, inherited EB is a genetically transmitted disorder characterized by marked fragility of the skin. Any trauma, no matter how minimal it may seem, is likely to cause the skin of an EB child or adult to tear or blister."
Please go to any or all of the DebRA web sites linked below to read more about EB.

"Hi! My name is Gary Christopher Bradley, and I am 13 years old. I was born on April 3, 1993, in Las Cruces, New Mexico. I was named after my daddy, but I go by my middle name, Christopher. My big sister couldn't say Christopher when I was born, so she called me Christer. My mommy and daddy are Tammy and Gary Bradley."

Christer was born with EB. He was born with the Junctional Non-Herlitz form of EB which means the two layers of his skin, the epidermis and the dermis do not connect properly in the middle. Junctional Non-Herlitz means his form of Junctional EB is not lethal.

Junctional Herlitz is an extreme form of EB and most infants who are born with this form live only a few months with an exceptional few living a few years. The other two main types of EB are Simplex and Dystrophic. Simplex effects the outer most layer of skin between the epidermis and the dermis, and Dystrophic effects the deepest layer of skin between the epidermis and the dermis. Each type of EB has it's own various subtypes which makes each child have a different level of severity with their particular type of EB.

The above definitions of EB are very simplistic. If you would like more technical definitions of EB, you can go to the following website... Blistering Diseases. There also is an article about hospitalization of an EB child that is very informative. This site is very graphic with pictures. Be prepared to see EB babies and children with the most severe forms of EB.

Christopher was born with minor damage to parts of both of his hands, and nobody could tell us why. Before a doctor could arrive who did know what EB was, extensive damage had already been done to his body from handling him improperly. The first few hours of Christer's life were a nightmare. His skin had been torn and he was blistering all over his feet and legs. We stood by helplessly as he screamed in agony, kicking his blistered and bloody feet. The burn trauma team was called in and his entire body was bandaged from his neck down, and he was then air lifted to the University of New Mexico Children's Hospital in Albuquerque.

Christer was in the Neonatal Intensive Care Unit (NICU) for three weeks, and Tammy and Gary had to immediately start learning how to take care of him and bandage him. Imagine having to wrap each tiny little infant finger with Vaseline gauze coated with gobs of slippery creamy medicine and then covering all of that with more gauze and not being able to grip this tiny little hand hardly at all so that you don't rip his skin off. Then imagine this precious baby is screaming with pain and his hands and feet are flailing all over. Then imagine having to bandage each little leg from the hips down to his tiny little toes. Imagine having to do this as quickly as you can and NOT let yourself get emotional and overcome by it. Then imagine that that is not bad enough, but that you have to do this two to three times a day for months, years, and probably a lifetime to one extent or another!

Not only do new parents of an EB baby have to instantly learn medical procedures and the lifetime care of an extremely fragile child, they also have to overcome an overwhelming grief for the loss of their dream of having a perfect and healthy baby. EB is a treacherous horrible monster! It causes such devasting pain and agony.

"Hi! My name is Jeffrey Thomas Bradley, and I am 6 years old. I was born on February 2, 2000, in Albuquerque, New Mexico, and I live in Las Cruces, New Mexico. I was also born with Junctional Non-Herlitz EB like my big brother Christer.

Since Christer was born with EB, we knew there was a 25% chance that Jeffrey would be born with EB too. When each parent is a healthy carrier of the EB gene, they have a 25% chance of having a baby with EB, a 50% chance of having a baby that is a healthy carrier of the gene, and a 25% chance of having a baby that does not have EB and does not carry the gene either.

Jeffrey was born at the University of New Mexico Children's Hospital in Albuquerque where his doctors were very prepared for him being born with EB. UNM Children's Hospital is also the only hospital in New Mexico that is equipped to deal with an EB infant or child.

Jeffrey was born with damage to the skin on his fingers, thumbs and tops of his hands. He had been sucking on his hands and thumbs before he was born, and his hands had to be bandaged immediately after he was born. Because the doctors were so prepared for his birth, there was no trauma to him during or immediately after his birth.

One of the reasons that Jeffrey was not damaged at all after his birth is that Tammy put together a list of do's and don'ts for all of the doctors and nurses. Tammy emailed the list to her doctor so he and the nurses could become familiar with it before Jeffrey arrived. She also took several copies to the hospital with her. One copy was taped on Jeffrey's bed so that every doctor and nurse could see it at all times. Tammy also carries a copy of this list with her in Christopher and Jeffrey's bandage bag that stays in her car at all times in case of an emergency.

A mom of an EB child has a huge amount of information on her websites about EB.

Please visit a couple of her sites...
EB Information Corner
and
EB Info World

Children with EB ...
... another very good website to visit that has several pages of pictures of children with all the different forms of EB. Be sure to check out the Junctional page for Jeffrey and Christopher.

		Adopt an EB Butterfly Angel
		The butterfly children are sufferers of Epidermolysis Bullosa. They have skin as fragile as a butterfly's wing which can blister at the slightest touch, even from a mother's cuddle. Normal day to day life can cause constant pain and scarring, which in the worst forms leads to eventual disfigurement, disability, and often early death. An estimated 100,000 people in the U.S. have some form of the condition. This of course does not include those who have the worst form of EB because they invariably die in infancy.

Click on the Panda above to go to the Panda Cam at the San Diego Zoo.

Through the Internet, Tammy and I belong to an online support group called EBWorld with people all over the world whose lives have been touched by EB. Mostly they are mothers with children who have EB, but there are several grandmothers and several who have EB themselves. We email each other all day and many times late into the night. We are a family and are very supportive to each other. We share the joys of our EB babies as well as the tears and frustrations of EB.

Christopher was granted his wish of going to Disneyland with all of his family by the
Make A Wish Foundation.
His trip started March 22nd and lasted until March 29th.

Christopher was featured as Pilot of the Day at Holloman Air Force Base, sponsored by the Children's Miracle Network.

In a quest to bring awareness of EB to our congressmen all over the country,
Debby Lilly, an EB gmom, wrote this touching letter.
IMAGINE THAT
Debby's grandson has the Recessive Dystrophic form of EB.

"I don't know of any disease that children face that causes such long term suffering. You know, you have children that have things that take their lives, but with this disease they suffer emotionally and physically for a long long time before they either die or...well, and actually in the severe forms that's what happens."
Lynn Anderson (President of EBMRF)

Lynn and her husband have two EB Angels in Heaven.

One day with no crying, one day with no pain,
One day of not suffering those blisters again.
One day with no dressings, or needles or cream,
One day you'll awaken with laughter, not screams.

One day of not fearing the slightest tumble,
And to watch you join in with your friends rough-and-tumble.
One day without feeling great surges of guilt
For the genes that I gave you, imperfectly built.

One day of not having to turn a blind eye,
to the ignorant stares of some passers-by.
One day in the future, a potion they'll issue,
To toughen your skin that's as strong as wet tissue.

One day a complexion of peaches and cream,
Will become a reality, not just a dream.
One day with no crying, one day with no pain.
One day without suffering those blisters again...
...one day.

If The World was Blind

If the world was blind, maybe then we'd see
the true side of beauty, deep within you and me.
No one could judge us by our outer looks,
like the fancy covers on expensive books.
We'd see with our hearts, and not just our eyes,
and what we'd discover might be a surprise.
There would be no need to try to impress,
with the way we look, or the way that we dress.
The only thing that would matter is the way we would feel,
not different or odd, but truthful and real.

~~~ Author Unknown ~~~

JEFFREY
By Joey Bradley

My little brother Jeffrey,
Gets bandaged by our mummy.
When they are finished,
He's bandaged from toes to tummy.

My brother Jeffrey has EB,
That means he gets blisters.
He got it from our parents,
Just like our brother Christer.

When Jeffrey plays peek-a-boo,
He squeals and laughs and chases me.
He comes so fast and tries so hard,
I'm afraid he's going to wear out his knees.

On Ground Hog Day I turned twelve,
And Jeffrey turned one.
We had a party together,
That was so much fun!

"I want the whole world to see, not the difference,
but the sameness of children with disabilities.
Thank you for seeing children through the eyes of acceptance."

Nama blowing kisses!

This website was made for Christer and Jeffrey with lots and lots of love!

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	Nama loves Pandas and found this Panda kissing a butterfly, and she just couldn't resist adopting one for us.

	The Epidermolysis Bullosa SiteRing This site owned by Linda Rosenbloom