Four-year-old boy with 'butterfly skin' disease lives every day in pain

Brody Curtis was born with extremely fragile skin.

Somewhere in Charlestown, Indiana lives a young boy whose daily life is filled with agony and pain. Four-year-old Brody Curtis suffers from epidermolysis bullosa (EB), also known as "butterfly disease." The boy's body is full of deep open wounds and has to take several different medicines to ease the pain.

Brody was born with the life-limiting condition in May 2011. Doctors diagnosed him with EB, since he was born missing skin on his hands, legs and feet. The condition is dubbed the "butterfly disease," given the skin's fragility, similar to the thin and easily breakable butterfly wings. There are different types of EB; the kind Brody suffers from is a recessive dystrophic epidermolysis bullosa. This means his body is missing collagen 7, which holds the skin together.

According to Brody's mother, Heather Curtis, the doctors described collagen 7 as a Velcro that is sandwiched between each layer of the skin and that Velcro holds the layers to the others. "Brody is missing that Velcro, so his skin layers are basically just lying on top of each other instead of being attached," explained Heather.

Brody's condition means he cannot walk, stand or crawl. In order to move around, the boy uses a scooter or wheelchair. His skin is very fragile and easily ripped. Heather explained that the boy tore all the skin off his ear just by taking his shirt off.

The four-year-old boy's body had to be covered in bandages and he needs to be placed in a medicinal bath for up to four hours several times a week. The process is excruciating for Brody who always cries in agony, as his body adjusts to the water.

In an effort to raise awareness about this life-limiting condition, Heather shared a video clip on Facebook to show just how agonizing EB is. However, Facebook took the clip down because of its graphic content. That didn't stop the clip from going viral before it was removed from the social media site. 

Heather stated that her intention wasn't for the video to take off like it did. Brody's mother previously posted cute or funny videos of her son, but felt that it was time for other people to see how bad EB could be. 

Brody continues to take his daily medications and weekly treatments. The family also visits the Cincinnati Children's Hospital in Ohio around 10 to 20 times a year, for Brody to undergo extensive treatments, such as blood transfusions, skin grafts and throat dilations. They are also exploring alternative treatments and contacted the Stanford University in California for a clinical trial the university has been running on adults with the same EB type.

Brody's mother and family have set up a GoFundMe page titled, "Blessings for Brody," to ask for donations to help cover medical costs.

Let us all say a prayer for the young boy and all suffering with the extremely painful "butterfly skin" condition.

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