A Prayer From the Child of the WORLD

As you pray for the family of Reverend Jerry Falwell, also remember these kind folks:

IMAGE DELETED DUE TO COPYRIGHT INFRINGEMENT

Children with Epidermolysis Bullosa

Your skin rubs off like peanut butter from a bread knife. You took a misstep against the coffee table. Not because you’re drunk, but because you’re nine and have Epidermolysis Bullsoa. From Nicky’s EB Info World:

Epidermolysis Bullosa Patients 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 worse forms, leads to eventual disfigurement, disability and often early death.
EB is an inherited disease that affects less than 10,000 children and adults in the United States. According to the latest figures, most of these patients suffer from the simplex form of EB, about 600 have the Junctional form, 600 have RDEB, 840 with DDEB 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. One forms 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 HMO’s refuse to pay for.
The saddest part is that EB is so rare that most doctors and nurses can work a lifetime and never bump into this condition.

At least you’re not THAT guy at the party.
“You’re dressed as a mummy! So classic! Nice.” The guy is holding a glass of champagne in his hand and a wonderful girl under his arm wearing a Bea Arthur outfit. It’s Halloween. His outfit is remeniscent of a Misfits stage prop. You’re drunk so you break the truth.

“I have Epidermolysis Bullosa. EB for short. Touching me might end up killing me.” Your straight face commands the guy’s attitude from jubilant to empathy-and-fear ridden.

“What?”

“I’m not a mummy, fucker. It’s hard enough to get in these special loose-fitting clothes, let alone some Halloween costume. Excuse me…I’m gonna go molt.”

Everyone would be dumbfounded, but you would lose in the end. Because you would live to the age of 13.

People With Downs Syndrome

Know these things, and these only; Your parents chose to have you after they knew that you were mentally and physically retarded; They tell you that you’re beautiful because you’re functioning HALF of what a normal human would be at the same age. Here’s what’s comin’ for ya:

While some kids with DS have no other health problems, others may experience a host of medical issues that require extra care. For example, half of all children born with DS also have congenital heart defects and are prone to developing pulmonary hypertension (high blood pressure in the lungs). A pediatric cardiologist can monitor these types of problems, many of which can be treated with medication or surgery.

Approximately half of all kids with DS also have problems with hearing and vision. Hearing loss can be related to fluid buildup in the inner ear or to structural problems of the ear itself. Vision problems commonly include amblyopia (lazy eye), near- or farsightedness, and an increased risk of cataracts. Regular evaluations by an audiologist and an ophthalmologist are necessary to detect and correct any problems before they affect a child’s language and learning skills.

Other medical conditions that may occur more frequently in children with DS include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection, and a higher risk of childhood leukemia. Fortunately, many of these conditions are treatable.

The one emotion that downs kids can’t feel is sadness. I hope this brings it to them.

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Comments
One Response to “A Prayer From the Child of the WORLD”
  1. Anonymous says:

    You do not have permission to post pictures from the ebinfoworld.com website, please remove or I will contact your server which will remove it on my behalf.

    Thank you

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