'Butterfly child's rare skin disease spurs charity to start social media campaign

  • Updated: Nov 06, 2014 19:21 IST

If you’ve ever accidentally burned yourself on the stove to the point where you thought you might pass out from the pain this is what a 11-year-old boy deals with on a daily basis.

Brayden Mann has an extremely rare genetic condition called Epidermolysis Bullosa (EB), affecting one in 50,000 births. The skin disease results in painful blisters, open wounds and shearing of the skin from even the most gentle of touches. EB sufferers have been called “Butterfly Children,” as their skin is as fragile as a butterfly’s wing.

The feeling has been compared to having second and third degree burns on the body.

“He’ll wake up with skin missing, just the way he rubbed while moving in bed,” says Deep Mann, Brayden’s mom.

Because the condition is so rare, diagnosing it was difficult. A pediatrician once told her not to worry, that it’s not painful and he would grow out of it. Not only was the doctor wrong, the disease is so painful that Brayden takes Tylenol and Advil for pain management. Some children with EB are prescribed morphine, something Deep wants to avoid.

In the more severe versions of EB the hands and feet become webbed and the children are bound in wheelchairs.

But perhaps the most painful part of the disease comes in the form of reaction from other people.

“The biggest reason why we want people to be aware is a lot of kids stare,” said Mann, her voice cracking.

Brayden was teased by another child in his school to the point where he told his mother he didn’t want to live anymore. He was eight years old at the time.

“The hardest part about living with EB is that I’m not able to sleep properly, the constant pain keeps me from playing sports like my friends, and it bothers me when people stare at me when I’m bandaged. EB is not contagious,” said Brayden.

Expressions of suicidal thoughts led the family to follow up with an “awareness session” at his school, Boundary Park Elementary, to teach his classmates about the condition.

“He became a celebrity after that,” recalls Mann, laughing. “All of the kids wanted to meet him, which was kind of cute.”

On Oct. 24, local residents hosted a fundraising event at Morgan’s Public House in Surrey, raising $3,500 for DEBRA Canada, a charitable non-profit that helps support families with EB.

The charity is also requesting the community’s support to jumpstart a social media campaign called #EBBalloonPop. Explains Mann, “as part of daily wound care, EB patients often need to pop their blisters. In order to raise awareness, we are asking the community to have fun, be creative and pop a balloon in support of EB. They should nominate someone else to do the same.”

Similar to the ALS Ice Bucket Challenge (hashtag #icebucketchallenge), balloon pop photos and videos can be uploaded to Twitter, Facebook and Instagram with the hashtag #ebballoonpop,

Currently, there is no cure for EB and wound care is the only treatment option available

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