EB skin is as fragile as a butterfly's wings, so we are known as the "Butterfly Children"

Ox is now 6 and is very much a typical first-grader. He's quite popular amongst his classmates and has made many new friends this year. Oxlee is also participating in Boy Scouts. He is a Tiger Cub this year and is loving it, so far.
I am amazed each and every day at how quickly he grows and learns. Sometimes in the middle of a conversation I have to sit back and think, wow, did he just say that?
Oxlee Jr. got his first dog, Titan, a few months back. Ox and Titan are pals and Oxlee Jr. thinks it's great that the dog listens to him better than it listens to me.
 

I am very thankful to have my son in my life, despite all the challenges and heartaches that face us. I know my son is strong-willed, determined and stubborn and I feel that these qualities were given to him because he needs them to cope with his EB, which he does. Oxlee is one of the most amazing kids I have ever met, and I don't just say that because he is mine. All the children I have met with EB share that same "something" that you can't put a finger on, but it just makes them shine a little brighter.
 

Oxlee has quite a few interests. His toy collection goes on and on but his favorites are his superheroes; Batman, Superman, Spiderman, you name it. He loves to watch Cartoon Network and I couldn't even begin to rattle the list of his favorite movies. His movie collection rivals Blockbuster!!

The older Ox gets the more he wants to pal around with his Daddy. They are the best of friends and it's great to see how much Jr. aspires to be like Sr.

One thing is for sure, Oxlee Jr. surely misses his cousins back up in New Jersey. Melina, DJ and Monae are such great playmates when he visits and he misses them all very much.

There has been quite a buzz surrounding Epidermolysis Bullosa in the last two years or so. From Primetime specials to Discovery Channel specials to newspaper articles and magazine clips...I'm hoping that all the attention leads to bigger and better things - preferably a cure! We are always supporting some sort of fundraising project and constantly spreading awareness about EB, however, we can always benefit from more people getting involved.

Thank you for checking out "Oxlee's Place". Please check back often to see what else is new and for news on EB. If you have a second, please email us- he loves to get mail!!

 

WHAT IS EB?

Epidermolysis Bullosa is the name given to a blistering condition that varies widely in severity and forms. There are many who are diagnosed with milder forms which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal. Other patients are much more fragile, much more severe, and live in constant pain and scarring, which, in the worse forms, leads to eventual disfigurement, disability and often early death.

 EB is an inherited disease that, according to the latest figures from the EB registry affects less than 10,000 children and adults in the United States. Most of these patients suffer from the simplex form of EB, about 600 have the Junctional form, 600 have Recessive Dystrophic, 840 with Dominant Dystrophic and 320 with some unclassified form of EB.

People born with EB lack anchors that hold the layers of their skin together. As a consequence, any activity that rubs or causes pressure produces a painful sore akin to a second-degree burn in patients with the Recessive Dystrophic form. While many forms of EB are mild, some are not. One form of EB is lethal in the first weeks or months of life. Some are mutilating over time. Infection is a serious, ongoing concern. As if the diagnosis is not heartbreaking enough, no treatment for EB has been effective. Parents have coped by protecting the child's skin with gauze and ointments to prevent and protect the wounds and healthy skin-something that HMOs refuse to pay for and can cost a family up to several thousand dollars a month.

The saddest part is that EB is so rare that most doctors and nurses can work a lifetime and never bump into this condition, hence they are at a loss on how to help an EB child without finding the very few doctors that are knowledgeable.

"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, 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 the EBMRF)

 

 

 

 

 

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