Brayden Mann

‘Butterfly’ child aims to shed light on EB

Surrey family shares struggle of dealing with little-known disease

As Brayden Mann shows off his room, the 11-year-old Surrey boy pulls out the drawers to the left of his bed.

Instead of plush toys, Legos or board games, the large drawer is full of needles, gauze, bandages and other medical equipment.

It’s been full of such paraphernalia for some time.

When Brayden was almost a month old, his mother, Deep, discovered a tiny blister on his delicate skin. Not knowing what it was, she took her son to the doctor, and soon began a year-long journey to find out what what happening to her baby.

Finally, after a slew of incorrect diagnoses, the family was told what was happening to Brayden, but the answer brought little relief.

Brayden was diagnosed with epidermolysis bullosa (EB) – a connective-tissue disease causing blisters in the skin and muscosal membranes.

“I had never heard of it before,” Deep recalled, noting that 10 years ago there was even less information than is available now.

According to DEBRA Canada – a non-profit organization focusing on EB awareness – EB is a result of a defect in the anchoring between the epidermis and dermis, resulting in friction and skin fragility.

Often, children with EB are referred to as “butterfly children,” because the skin is said to be as fragile as butterfly wings.

EB severity ranges from mild to lethal, and their blisters are often described as similar to second or third-degree burns. Brayden’s diagnosis falls under the dystrophic classification of EB – one of three – which is caused by genetic defects within a gene encoding the protein-type VII collagen.

“It’s all preventative, there is no cure,” Deep said. “I remember having to be so delicate with him. You know, when you pick up your baby under their arms, I couldn’t do that, because it would cut him and his skin would start falling off.”

Because of his condition, which Deep stresses is not contagious, Brayden has had to forgo many of his passions, including sports.

Merely rubbing his feet across carpeted floor – which the Mann family has now removed from their home – could cause a blister or a cut.

Brayden’s clothing has be carefully scrutinized because rough fabric can cut his skin. Even his bedding causes him discomfort.

“He’ll wake up at night in pain, and there’s nothing we can do,” Deep said.

Adding to the family’s stress is the ignorance on EB.

At school three years ago, Deep explained, Brayden was bullied about his condition to the point that he began expressing thoughts of self-harm.

“It ripped us up inside. To think that you could lose someone you love over something someone could say… It just breaks your heart,” she said.

Brayden’s brothers, Tajan, 14 and Akshay, 4, are both aware of the struggles Brayden deals with each day, and are both protective of him, father Terry noted.

While the school’s then-principal was quick to act – along with Brayden’s special education assistant (SEA) – Deep said the same support is not in place anymore.

Now, Deep said, steady cuts to Brayden’s time with his SEA have climbed to 50 to 60 per cent. And on Nov. 3, Brayden had no SEA support at all.

Deep said she’s concerned the lack of understanding over her son’s condition – which includes treatment for attention deficit hyperactivity disorder and anxiety – could put him in situations where he will get hurt, especially during gym class where he has no additional support.

Outside of school, Deep said Brayden is subjected to stares and comments, which he says hurt his feelings.

“It makes me feel bad,” Brayden told Peace Arch News sitting with his mom and brothers for this interview. “It hurts me. I wish someone would find a way to make EB better.”

For Deep – who has become an active member of DEBRA Canada – she prefers if people came up to her and asked her about Brayden, rather than assuming she has “burned my child or been a neglectful parent.”

She and Brayden hope that by shining light on “the most painful disease you’ve never heard of” that people will be more understanding when interacting with those who have EB.

Last month, Deep’s close friends organized an EB fundraiser at Morgan’s Public House in South Surrey in order to raise much-needed funds for research and EB projects, and to raise awareness.

While Deep had reservations about how many people would turn out, the event was a sold-out success, with more than $3,500 raised for DEBRA Canada.

“It was amazing,” Deep said.

DEBRA Canada is also taking a page out of the ALS water-bucket challenge with their balloon-pop challenge, called #EBBalloonPop, where participants share a video or photo of themselves popping a balloon.

“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,” Deep said.

While Brayden’s life has become restricted due to his EB, both parents strive to create some normalcy for their son, who has a passion for cooking.

Members of DEBRA also hold an annual party – either Christmas or Halloween – with the support of BC Children’s Hospital, where everyone can come together and make connections.

“No one really knows what you’re going through, unless they’re going through it, too,” Deep said.

For more information on EB or DEBRA Canada, visit www.debracanada.org

 

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