Power Boy faces rare adversaryBen, an 8-year-old Alexandria boy, teamed up with some Real Life Super Heroes to battle a rare disease that affects his nervous system.
By: Crystal Dey, Alexandria Echo Press
The underdog in the real world escapes into a fantasy reality where he is a super hero in tights, a mask and a cape – and he is powerful. That’s the way it’s always written. What about when it really happens?
Ben Roseth had a seizure when he was 18-months-old. A year later, he was diagnosed with Adrenoleukodystrophy (ALD), a neurological disorder. His older brother, Patrick, was already diagnosed with high-functioning autism (HFA).
One in 88 children has an autism spectrum disorder. Four live in one home in Alexandria.
“It’s different for each autistic child,” said Brandy Roseth, Ben’s mother. Ben has two younger sisters who also have been diagnosed with HFA.
Autistics with HFA can maintain relatively normal lives. The children attend Voyageur Elementary School in Alexandria, where they participate in a state-funded afterschool program for children with disabilities, Roseth said.
ALD and autism have similar characteristics. Because of the wide range of behaviors and symptoms of autism, categories are being redefined. Autism spectrum disorder is part of this redefinition.
Ben has been diagnosed with pervasive development disorder, a different form of autism than his siblings.
HFA is not a recognized term by the Diagnostic and Statistical Manual of Mental Disorders and closely resembles Asperger syndrome.
While a lot of attention has been given to autism in recent years, most people have never heard of ALD. Awareness was raised in 1992 when the movie Lorenzo’s Oil starring Nick Nolte and Susan Sarandon was released, but has since waned. Roseth hopes to help bring ALD awareness back into the public’s view.
Awareness needs to be heightened in order for a cure to be pursued – but one will probably not be found in Ben’s lifetime. One in 20,000 children is plagued by the disease.
Roseth emphasized that some children have much more severe symptoms than Ben generally exhibits. “Ben is one of the lucky ones,” she said.
BECOMING A HERO
In 2010, Ben’s condition began to worsen and trips to Mayo Clinic in Rochester started to increase. The symptoms of ALD were wearing on Ben and it was getting harder for him to smile.
“He was really sad all the time,” Roseth said. Ben’s father, Chris, mentioned “Geist” – one of the Real Life Super Heroes (RLSH) in Rochester. “We needed to do something to perk [Ben] up,” Roseth said.
RLSH members are everyday people who don costumes to perform humanitarian acts within their communities.
Ben perked up when he met Geist. The two have become each other’s biggest fans, Roseth said. Ben also met another Minnesota RLSH member, “Razorhawk.” Razorhawk designed Ben’s “Power Boy” costume and official ALD awareness patch.
Razorhawk had a few more costumes to concoct. After meeting members of the Minnesota chapter of RLSH, the Roseth children banded together and created the “Fearsome Four.” Together, the siblings support Ben, each other, and the community.
Eight-year-old Ben was given the name Power Boy because he has been so courageous and powered through his ALD. Eleven-year-old Patrick was given the name “Super Sargent” for his protective nature over his siblings. Ben’s Irish twin sister, AJ, 7-years-old, adopted the moniker “The Pink Lantern” (a Green Lantern fan who likes pink) and the youngest, Nora, 6-years-old, is “Little Tornado” because she exhibits an autistic rocking behavior.
The quartet has donated stuffed animals and teddy bears they bought with their allowance money to the Douglas County Hospital surgical center and emergency room; helped with Christmas toy drives; and participated in providing hand and boot warmers for the homeless. Roseth said the kids try to do something at least once a month.
“The kids like seeing people smile,” she said.
REAL LIFE SUPER HEROES
Real Life Super Heroes have a presence worldwide, but are more prevalent in the United States. The movement started in the 1970s.
Minnesota RLSH established the Great Lakes Hero Guild. Geist and Razorhawk were invited to KSTP-TV to report on their Great Lakes patrol in Minneapolis; the segment was later broadcast nationally on ABC Overnight News.
RLSH members aim to help the disadvantaged and bring justice to their local communities. Police advise against these actions in some cases because they resemble vigilanteism and could endanger the people behind the RLSH masks.
Geist was featured in Aftenposten, a Norwegian publication, in 2009. He has also been included in articles produced by MSN, Empire Magazine and GQ. Razorhawk appeared on Fox News’ America Newsroom.
The first gathering of American RLSH, Superheroes Anonymous, occurred in Times Square where the heroes cleaned up the area, helped the homeless and handed out crime prevention materials.
Ben’s received encouragement from the California Initiative branch of RLSH and is planning a trip to Seattle with his mother to participate in a homeless awareness event called HOPE, in July.
Now the RLSH have added ALD awareness to their do-gooder list of pursuits.
“They raise awareness for all kinds of things,” Roseth said. “But it wasn’t until my Fearsome Four came to the group and made people ask, ‘What is [ALD]’?”
Team Power Boy patches to raise awareness for ALD can be purchased from the Atomic Hero Wear store online at http://hero-gear.org.
See related article What is ALD?.