Boy battles rare disorder with 'Fearsome Four'

NEED TO KNOW
  • Minnesota boy raises awareness about rare disorder
  • Fearsome Four: Siblings become superheroes for support
Boy battles rare disorder with 'Fearsome Four'
Power Family

Brandy Roseth has four children. Three of them have autism. The other, Benjamin, has Adrenoleukodystrophy or ALD. The crippling disease robs the eight year old of his strength, his power.

“Ben can get a fever and then all of a sudden his legs don’t work,” she said. “He has trouble keeping weight on. The signal doesn’t go to his body that tells him he’s hungry."

Ben’s condition worsened a couple years ago and he had to be admitted into the Mayo Clinic, about a four-hour drive away. The visit changed their life.

At the hospital, they met a caped crusader by the name of Geist, a do-gooder affiliated with the Real Life Superhero movement in Minnesota. He lightened the boy’s mood and his condition improved a bit. But more bad news followed. “We had just gotten home when Ben got hit with H1N1. We had just gotten home from a week of treatment,” the boy's mother said.

Enter: The Fearsome Four

It was then that Roseth noticed something stirring in her children, something super. The kids gathered around Ben and they kept saying “Ben is so tough, going through all the things he’s been through. ... You’re so tough, we should give you a name,” she said.

“Between the brothers, they came up with Power Boy.”

His super siblings joined in for support. The oldest, Patrick – Super Sargeant -- is 11. Power Boy – Benjamin – is eight. Alanna – Pink Lantern – is seven. And Nora – Little Tornado – is six years old.

“They all became a team,” she said. “They are called the Fearsome Four.”

They have teamed up not only for their brother, but for their community in Alexandria, Minnesota. “We try to do small things around our community,” said his mother. “They’ve gotten dressed up to pick up sticks in neighbors’ yards. They’ve also donated teddy bears to children in hospitals.”

Adrenoleukodystrophy is a rare disorder. The disease affects approximately 1 in 20,000 people, according to statistics from the Department of Health and Human Services. There is no cure.

“We’ve been able to increase steroid treatments. We’re trying to stop it from reaching the brain. If it hits the brain, it’s fatal," she said.

Ben has shown superhuman-like strength in battling the disorder, his mother said. “It’s basically like your body is turning on itself. You know how when you get startled your adrenaline starts to pump through your body? In Ben’s case, it’s like an acid that starts to eat at the protective layer around the nerves,” she said. “It’s killing the body.” She said symptoms can include anything to seizures to mental retardation.

'There are children out there worse than him'

The mother is divorced, but her former husband “is still a great father, he’s still around for the kids,” she said. But things are still difficult.

 “There are no real big programs for ALD,” she said. “We send out information so that Power Boy can help raise awareness about ALD."

Power Boy has a Facebook page set up that chronicles his adventures and raises awareness about ALD and autism. 

His mother, who does art and is able to work from home, raises money for him by selling Power Boy bracelets and other associated paraphernalia. “I send them from my home,” she said, adding that they’re homemade. “I special order them and then I special-make them."

Roseth said she wanted to make one thing very clear: “There are children out there worse than him.”

Together, Ben’s siblings give him “a lot of courage,” she said. “He faces so many difficult things and they face them together.” Her affiliation with a nationwide Real Life Superhero network has given the children – and the mother – a much-needed shot in the arm. Recently they returned from a Make A Wish event in Florida in where they met another superhero group called Team Justice. The group raised funds for Ben's Mayo Clinic visit.

Roseth was hesitant about the super hero thing at first, “but as I started researching I started seeing more and more people doing this,” she said. “I met some great people.”

The super hero collective “helped encourage me as a mom to open up a webpage,” she added.

The trio of siblings aren’t strong enough to leap tall bounds. They aren’t faster than a speeding bullet. “They are a great encouragement,” she said. “You know how kids are. If someone’s picking on him (Ben) at school, they watch his back. … If Ben gets sick the kids are big on helping him. They sometimes feel lost but we work through it."

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